Australia: 2022 Parliamentary inquiry into Long Covid and repeated covid infections - report issued April 2023

[Arnie Pye]

Submission #311 is from a young woman who has battled horrific gaslighting since becoming ill in 2020. It is shocking.

It won't be a surprise to any of us in Australia.

I didn't intend to read all of this submission but once started I couldn't stop. The gaslighting the author suffered is just astonishing and shocking. Are Australians (either doctors or the general public) actually reacting to these reports in any constructive way?

 

[rvallee]

This tells us one major thing about medicine: that without an accurate theoretical framework, learning from experience simply does not work. It is entirely possible for healthcare services all over the world to see things that are clearly not there, that are so obviously wrong that a child could see through, and never learn anything out of it even after millions of consults and years to figure the basics.

Simply absurdly pure incompetent negligence. Once failure gets normalized in medicine, it locks itself in place, making it impossible to undo because admitting to an error means having done harm and that's just unthinkable, no matter how many times it happens again and again.

Those are quotes submitted to the Long Covid enquiry by LC services who make decisions in real life based on this garbage:

“Inspirational Quotes” from some of our major hospital submissions to the Long Covid Inquiry for International Day of People With Disability #IDPWD2022. Credit: @siobhansimper Cc @YouAreLobbyLud @DavidJoffe64 @TraceySpicer @1goodtern @ElizaCharley https://t.co/woeYUUvf7Y

Absurd. There is simply no other instance of systemic failure by an entire profession happening in the last half century, if not more. A failure that will feature prominently in history books.

 

[rvallee]

The biggest takeaway by far is the complete disconnect between the patients and the professionals. It is basically as wide as the gap between a privileged aristocracy and the poorest of their workers whose suffering gives them a life of privilege. Or, quite frankly, as wide as the gap between abused and abuser, as it's obvious that the healthcare services think they're doing a great job while you can clearly see harrowing tales of needless cruelty dished out on vulnerable people in a moment of crying need.

It's the same story everywhere. And it still makes no difference. Reality truly makes no difference on healthcare decisions, it's all perception and only the healthcare services', never the patients. Easy to see why this is all broken, supply-side medicine makes no sense at all.

 

[Art Vandelay]

I didn't intend to read all of this submission but once started I couldn't stop. The gaslighting the author suffered is just astonishing and shocking. Are Australians (either doctors or the general public) actually reacting to these reports in any constructive way?

Senate Inquiries don't really garner a lot of media attention and Long Covid is not at all on the radar here, so there hasn't been any attention given to reports of people with LC being gaslighted and abused.

Those of us with ME/CFS have been treated like this for decades and no-one has paid any attention. I've been abused by medical professionals on dozens of occasions and there are almost daily reports of abuse in ME/CFS forums. Most healthy Australians simply refuse to believe that the situation can be that bad.

(I've even been gaslighted about being gaslighted. After undergoing a health assessment from a specialist who appeared very sympathetic, I thanked him for believing me and treating me with consideration. I pointed out that I'd been severely gaslighted in the past by other doctors, to which he replied "that seems unlikely".)

My (cynical) prediction for this Inquiry is that the conclusions will largely side with the medical profession and patients will be ignored yet again. If I recall correctly, most of the Senators on the Committee are doctors and the medical profession here always closes ranks when confronted with stories of bad behaviour from doctors. (A friend is a doctor and he used the phrase "dogs don't eat other dogs" in relation to it.)

ETA: more highly problematic submissions from the medical establishment have been posted in the News from Australia thread: https://www.s4me.info/threads/news-from-australia.17290/page-10#post-449323

 

[RedFox]

Submission #311 is from a young woman who has battled horrific gaslighting since becoming ill in 2020. It is shocking.

It won't be a surprise to any of us with ME in Australia.

This is horrifying, above and beyond anything I've experienced in America. Her teeth were moving in her mouth, she was dangerously underweight because she couldn't stop vomiting, and she was so uncoordinated she couldn't cut food without hurting herself...and she was told it was psychosomatic by over 25 doctors?!

 

[Art Vandelay]

I've just had a quick look at the transcript for the second public hearing held in Liverpool, NSW.

The only people invited to take part are medical professionals. According to them, everything is fine and they can discharge most Long Covid patients after 1-2 visits. Patients just need a bit of reassurance and encouragement to stop being "hypervigilant" about their symptoms. Hospitals just need more psychiatrists, psychologists and physios to help with the gaslighting.

Then there's this from one of the MPs on the committee, who, according to her bio, is also an infectious diseases physician:

Dr ANANDA-RAJAH: I've always been concerned that we're over medicalising this problem

This GP starts out well:

Dr McCroary: I'm here as a GP from south-west Sydney. I chair the New South Wales AMA Council of General Practice and I'm also on the council of the RACGP NSW and ACT, representing the south-west of Sydney and I'm on their expert committee in quality care. I chair Sydney South West GP Link the amalgamated Divisions for General Practice in our region, and I have a significant interest in long COVID as I'm the GP lead on our multidisciplinary south-west Sydney working group on long COVID. I'm also currently the acting chair for the New South Wales community of practice for general practice COVID
...
I'd like to start by mentioning a letter I got from a patient just recently, complaining of debilitating fatigue, brain fog, shortness of breath, lack of smell, unrelenting joint and muscle pain, difficulty sleeping, difficulty doing everyday activities and difficulty participating in society in general. There were also more significant symptoms: sick sinus syndrome, requiring a pacemaker insertion; loss of peripheral vision; debilitating headaches; and nephrotic syndrome. Now, this person has all the signs and symptoms of long COVID, but her complaints have been present for about 15 years now. She's one of the many, many people that we deal with in general practice, and have been dealing with for decades, suffering from other post-viral syndromes: fibromyalgia, chronic fatigue syndromes and a host of other autoimmune diseases.

I just thought I'd read that one to begin with to try and explain that long COVID, and the symptoms and sequelae of COVID, are not new to general practice. We've been dealing with this sort of thing for a long time. However, at the moment we're giving a lot more attention to it because of the significant numbers we're going to be seeing, and my major theme today is trying to decrease the numbers of long COVID we're going to be seeing and also put in place structures that will help us manage them.

But he then quickly displays his ignorance:

The other interesting thing is that I find the most important determinant of how well people with long COVID do is if their symptoms and signs are validated and they feel validated by their healthcare professionals. To me, the validation and the anxiety mean that this is not just a normal post-viral syndrome. This one's caught up with this area and the significant shifts in our behaviours and in our lives that have been happening over last couple of years. With better support, better early support, better GP-led clinic targeted support, I think our outcomes are going to be much better if we get in and do it.

There's a lot of evidence, particularly with these post-viral syndromes, in terms of exercise, in terms of diet and in terms of psychological support. We have some medications—tricyclics et cetera—that may well be helpful.

 

[Hutan]

Thanks @Art Vandelay. I'm not sure that I can bear to read the rest of the transcript.

The other interesting thing is that I find the most important determinant of how well people with long COVID do is if their symptoms and signs are validated and they feel validated by their healthcare professionals. To me, the validation and the anxiety mean that this is not just a normal post-viral syndrome. This one's caught up with this area and the significant shifts in our behaviours and in our lives that have been happening over last couple of years. With better support, better early support, better GP-led clinic targeted support, I think our outcomes are going to be much better if we get in and do it.

I'm trying to think how that GP could have come to his conclusion. All I can think is that he has had some patients with LC come to him, having been traumatised by the sudden change the illness has caused to their life and also by being disbelieved by other doctors. This doctor believes them and supports them, and they are grateful, they might even have a few tears. They look a bit, to someone who hasn't suddenly found themselves in that same situation, overly emotional.

Meanwhile, time has been passing. Some of the patients naturally recover. Some have learned better how to live within the constraints the illness imposes. They all seem better than when they first turned up at this doctor's office. The doctor assumes that this is because of something that he has done.

 

[Peter T]

Meanwhile, time has been passing. Some of the patients naturally recover. Some have learned better how to live within the constraints the illness imposes. They all seem better than when they first turned up at this doctor's office. The doctor assumes that this is because of something that he has done.

Also I wonder how quickly people learn that the doctor has nothing to offer to treat them, so they stop visiting the doctor in relation to these issues. When I was well enough to visit my GP I only visited him if I had novel symptoms or if I believed there was something specific he could do. Most of the time I felt there was little point in wasting his time or my energy for something he could do nothing about.

 

[hibiscuswahine]

Thanks @Art Vandelay.
I'm trying to think how that GP could have come to his conclusion. All I can think is that he has had some patients with LC come to him, having been traumatised by the sudden change the illness has caused to their life and also by being disbelieved by other doctors. This doctor believes them and supports them, and they are grateful, they might even have a few tears.

The GP is “BPS” trained, Lack of understanding of ME (and other post-viral/infectious illness from his other comments)

If a GP can “validate” the patient (in their own minds), eg. I used my time wisely, the patient was distressed and I gave them some emotional support and no further appointments made so that fixed their illness and we don’t want pwME/LC cluttering up our appointment books wanting some stuff they read in a support group, scientific forum etc….

 

[rvallee]

It's literally two alternative universes, the divide could not be wider. The patients are reporting a disaster. The professionals, who are responsible for the disaster, think everything is OK, no need to do anything, which is literally what the patients object to and complain. They talk about discharging patients quickly, which is literally one of the most common complaint: patients are discharged while still ill and no one follows up; out of sight, out of mind.

In the end it's all because we can't make trouble. And if we ever did do trouble we'd be lambasted as deviants. So it continues because no one can make trouble or it gets ever worse while the people responsible for this disaster are merrily feeling smug doing nothing. Supply-side medicine is frankly just as awful as top-down economic planning, just as detached from reality.

 

[Art Vandelay]

It looks as though the Committee has solicited further comment from the heads of a NSW Long Covid clinic in order to bury the link between ME/CFS and LC and to respond to the criticism of their treatment regimes (see submission #544). I will upload the files of the brief emails that make up the submission for people to dissect here.

I am too unwell to react at any length here. Let's just say these contributions continue to justify my complete lack of faith in the Australian medical profession, particularly when it comes to post-viral illness and their ability to properly assess the merits (or lack thereof) of clinical trials.

 

[Sean]

The Committee may be bending over backwards to make sure those psycho-behavioural LC clinics and the Very Special Experts leading them cannot possibly argue that they were not given a fair hearing. Like NICE did.

It might be a good sign that there has been so much criticism of them in other submissions.

The federal government has just cut the funding for psychs and physios for LC clinics, which also could be a sign that they recognise the lack of real value in them.

Trust me, I am as concerned as you, which is very concerned. It is impossible to be otherwise at this point. All we can do now is wait and see what comes out of this.

 

[Art Vandelay]

The Committee may be bending over backwards to make sure those psycho-behavioural LC clinics and the Very Special Experts leading them cannot possibly argue that they were not given a fair hearing. Like NICE did.

Yes, that's a very good point, Sean. I've been involved in a number of government inquiries in my former career and developed a lot of (perhaps unhealthy) cynicism for government processes.

As you say, we can only wait and see at this point.

 

[Art Vandelay]

Parliament invites leading experts to inform Long COVID and Repeat Infections Inquiry

How can you receive quality healthcare for an illness if there isn’t a clear definition of what that illness is?

This is one of many issues the country’s leading experts will address during a roundtable discussion at Parliament House in Canberra on 17 February 2023, to inform the Inquiry into Long COVID and Repeated COVID Infections.

Following a joint submission to the Inquiry by the Australian Academy of Science (AAS) and the Australian Academy of Health and Medical Sciences (AAHMS), they will bring together experts in areas such as infectious diseases, epidemiology, immunology, mental health and public health to provide evidence to the House Standing Committee on Health, Aged Care and Sport.

The experts will address topics including: a standard definition of long COVID that considers differences between adults and young people; the most significant knowledge gaps in the impacts of long COVID; which actions to prioritise in addressing those gaps; and how the government, research and health sectors can work to deliver those interventions.

Given the poor quality of the AAS and AAHMS submission (particularly the repeated assertion that Long Covid is a "new condition"), I don't have a lot of confidence that this discussion will be well-informed or productive.

 

[rvallee]

"Experts" being used very loosely here. Generic expertise doesn't work with a discriminated issue. The issue is clearly discriminated, the underlying concept is either not taught or taught incorrectly at medical school, which means that professional expertise doesn't work here, they are no more trained or competent on this than the average patient and no different than if they had missed an entire module with something else, have received no formal training.

Even after 3 years, it could not be more clear that learning from experience does not work in medicine, without a scientific model learning simply does not occur with most. At best single-digit low % even manage not to screw up the most important facts and that's the lowest of bars, most patients manage the basics in weeks unless they're misdirected.

The way out of the AIDS crisis showed a new model for doing things, and it was never repeated again. It's firmly rejected every time it needs to be put to use, unsurprisingly leading to nothing but failure.

Really though this all shows that we were punching way above our weights, given how small and divided and conquered we were. LC is making 1000x more noise and it still amounts to nothing better than we ever managed, because the same people are at fault yet again.

 

[bobbler]

"Experts" being used very loosely here. Generic expertise doesn't work with a discriminated issue. The issue is clearly discriminated, the underlying concept is either not taught or taught incorrectly at medical school, which means that professional expertise doesn't work here, they are no more trained or competent on this than the average patient and no different than if they had missed an entire module with something else, have received no formal training.

Even after 3 years, it could not be more clear that learning from experience does not work in medicine, without a scientific model learning simply does not occur with most. At best single-digit low % even manage not to screw up the most important facts and that's the lowest of bars, most patients manage the basics in weeks unless they're misdirected.

The way out of the AIDS crisis showed a new model for doing things, and it was never repeated again. It's firmly rejected every time it needs to be put to use, unsurprisingly leading to nothing but failure.

Really though this all shows that we were punching way above our weights, given how small and divided and conquered we were. LC is making 1000x more noise and it still amounts to nothing better than we ever managed, because the same people are at fault yet again.

The way out of the AIDS crisis showed a new model for doing things, and it was never repeated again. It's firmly rejected every time it needs to be put to use, unsurprisingly leading to nothing but failure.

I know this may be a big ask but approx what was that model? or its key difference/thrust just so that I know I'm on the same page

 

[rvallee]

I know this may be a big ask but approx what was that model? or it's key difference/thrust just so that I know I'm on the same page

Involving patients, and not just as photo-ops. Over time it became less significant but expert patients were critical to establishing the priorities and strategy in the early days, made sure that patient priorities were put first, rather than not even on the board. Working with needs in demand, rather than whatever supply people want to grab on to.

The essence of this model is Nothing about us without us. It has never been repeated. As far as I can tell, this model is considered a terrible idea, even though rejecting it has pretty much stagnated medicine more than anything else. In the end medicine by physicians for physicians isn't useful other than for the most basic stuff, it's medicine for patients that is important, and that idea is still firmly rejected.

 

[Art Vandelay]

 

[SNT Gatchaman]

https://www.theguardian.com/austral...s-and-homelessness-in-australia-inquiry-hears

Kelly said there was a need for a “clearer definition that can be useful to diagnose long Covid. The ones we’re using at the moment – the WHO definition, the NICE definition from the UK, they’re great for research purposes, because they’re so broad.”

“What data do you actually collect when you’ve got a new disease characterised by 200 different symptoms, with a range of tests that are being done in different ways in different places? … It’s very complicated,” he said.

Penelope McMillan, a spokesperson for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Australia, said she was not surprised by the testimony of people with long Covid.

“People with post viral illness – we’re not new. This is not new. I’ve had ME/CFS for 25 years, and the stories are so familiar.”

 

[Sean]

Worth keeping in mind that this is a parliamentary inquiry, not government policy. It is supposed to inform policy, but is not policy itself.

Government is under no obligation to accept all or any of an inquiry's recommendations. They usually do not accept all of them.

What comes out of the health minister's office is the stuff to watch for.

Quite a ways to go yet.