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

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?

 

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:

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.

 

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.

 

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

 

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?!

 

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:

This GP starts out well:

But he then quickly displays his ignorance:

 

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.

 

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….

 

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.

 

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.

 

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.

 

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.

 

"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.

 

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

 

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.

 

https://twitter.com/user/status/1626305059645493251


https://twitter.com/user/status/1626387855864918017

 

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