News from Australia

ola_cohn said:
Fix me or take me: The ballad of Rob Baker

Twenty summers after his blossoming cricket career was forever cut short, the former Australia U19 captain and WA prodigy reveals for the first time the full extent of a decade-long physical and mental battle that almost cost him his life

https://www.cricket.com.au/news/fea...ndrome-virus-illness-hussey-katich/2021-12-10
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Some quotes from the piece:

Baker was hit by a nasty virus the week prior to WA's first Sheffield Shield game of the 1999-2000 summer. He recovered in time to play, and made 33 and 77no.

A week later however, during the next Shield match, the symptoms returned – disorientation, grogginess, balance issues, fever, aching body – and he became very ill once again.
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"I was adamant I could beat most things with my mind, so actually accepting there was even anything wrong with you – even though you could feel it – was quite hard.

"And then you end up making yourself worse because you try to push through and train harder, and tell yourself there's nothing wrong with you. I was in a state of denial, and it just becomes this downward spiral."
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"The best way to describe the way you feel is like waking up with the worst, most toxic hangover you've ever had, and it just doesn't clear.

"You have this really groggy head, you often have a metallic taste in your mouth, and I went from being super fit to finding it just about impossible to walk around the block."
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Years later, in a speech he delivered to a room full of medical professionals at a chronic fatigue syndrome conference, he said: "I suffered constantly with the snide remarks and constant talk from the cricket fraternity that there was nothing wrong with me."
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"If you actually have a look at where my career was at the time and everything that was going on, what is the possible upside of me going, 'You know what, I'm crook – I'm out'? There's just none.

"And you're not going to put on this f---ing illness for 10 years, right?"
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"He'd go up and down, have good days and bad days," [his brother] recalls.

"I could pick the days when he was feeling sick. I could take one look at him, and his skin had this sort of greyish tinge to it, like all the colour had dropped out of him, and his eyes would be bloodshot and glazed.

"He would describe it as feeling like he'd been poisoned, and it was like it was trying to come out of his pores.

"If you or I felt like that, we'd stay in bed until we felt better, but … you can't stay in bed for 10 years."
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"I think I'm a more empathetic person than I once was, I have a greater understanding of things that can and do go wrong, that there are many layers to making up successful people. It's not just about the one-dimensional (concept of), 'The harder I work, the luckier I get, and if I don't make it, it's just because I wasn't mentally tough enough'.
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ola_cohn said:
Fix me or take me: The ballad of Rob Baker

Twenty summers after his blossoming cricket career was forever cut short, the former Australia U19 captain and WA prodigy reveals for the first time the full extent of a decade-long physical and mental battle that almost cost him his life
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It was a very good piece. So many parts resonated with me:

"He would describe it as feeling like he'd been poisoned, and it was like it was trying to come out of his pores.
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I've always described feeling 'poisoned' or 'hungover'.

I could take one look at him, and his skin had this sort of greyish tinge to it, like all the colour had dropped out of him, and his eyes would be bloodshot and glazed.
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Similarly, a close friend could always spot when I was really unwell. She said my eyes would become glassy and my skin would be very pale.

He adds today: "Everyone that really mattered knew I wasn't being a malingerer or faking or anything like that, and were as supportive as they could be.

"But there was a large group of, I guess, non-believers, from the medical community down … and people in the cricket community who either didn't believe me or just (couldn't) comprehend it.
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Sadly, the Australian medical community still can't comprehend it.
 
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Aquatic therapy is graded exercise in a pool. I was given a sheet of paper that was an exercise plan with time increases.

Aquatic therapy only works when the patient is at a place where they can increase their activity. I was beginning to feel like I might live again. I was coming off of medication. I had to become more active at home before I could start aquatic therapy. I was able to comfortably travel to and from the YMCA, before I could begin the exercises.

I know some of the patients dropped out of our study because they wasn't at a place where they could handle short term PEM. Starting the therapy to soon can lead to crashes that make MECFS much worse. I'm guessing many people with long covid are going to learn that hard lesson.

My heart goes out to the young woman in the video, I hope she waits before trying GET in a pool.
 
Another excellent video from Emerge with an interview of an ME/CFS sufferer:

“Like the worst hangover in the world combined with the worst flu in the world.”
Richard’s description of ME/CFS will sound very familiar to anyone living with Long COVID.
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Or on social media if you'd like to share it:


I found this video particularly heart-breaking.
 
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From an email:

"Emerge Australia’s Online Community Groups pilot project is in its final phase!
We are pleased to announce that our final groups are now open for bookings.

Now is the time to confirm your place, booking in for a peer support group that suits you. We have groups for people living with ME/CFS as well as their carers. All groups are kicking off in February and March 2022.

...
Bookings are essential and are now open for the following groups:
Full details of the groups, including information about the facilitators and bookings, can be found by clicking the group names, or by visiting our website."
 
The new Emerge CEO has had some good input into this piece on Long Covid.

Unfortunately much of the article is about 'fatigue'. I know I sound like a broken record, but this misplaced obsession with fatigue diminishes the hellishness of post-viral illnesses.

Long-term fatigue has been 'ignored' in Australia. Will COVID-19 change this?
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Ms Wilson says those with ME/CFS in Australia "are forgotten by our health system, because doctors don't know what to do with them," adding that some people "take 10 years to be diagnosed because no one had listened to them."

She sums up the situation: "These patients are [Australia's] forgotten people."

According to Emerge Australia, there is "considerable overlap between ME/CFS and long COVID ... [which is] unsurprising given many ME/CFS patients develop the condition after a viral infection."
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rvallee said:
Ah, well, now we know how to fix this: just give physicians every disease so they can learn from experience, which is clearly the only way to really understand anything. Unless someone has a plan B? Maybe something involving listening to patients and following the evidence, with science and all, so this is not necessary?

The inability to learn from experience as an observer is maddening. If one has to personally experience something to understand it then we are not dealing with expertise and this needs to be fixed at a fundamental level. We could have avoided all of this and instead here we are 16+ months into it and barely a few thousand people seem to have learned anything useful out of it, still not quite reaching where we were 3 decades ago and all the work done so far is barely playing catch up, mostly out of obvious dedication to avoid the inevitable conclusions.
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:laugh::laugh: weird isn't it - you'd think more of them would admire the Oliver Sacks stuff and have (if they didn't innately have it) learned to look into that. Their attitude seems so backwards looking to decide that insight from the person living in the body is 'irrelevant'. Someone is giving them bum steers during their training and onwards.
 
Yeah, this made me happy. Quite a bit of the detail was speculative, but the message that there is a biological underpinning, and that there needs to be more research came through really well. Thanks for sharing it @Art Vandelay. The Project is a tv program watched by a lot of people - googling suggests 600,000 to 700,000 people a night.

And Waleed, the guy who narrated the piece, has a high profile in Aus media.
 
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