2022 Australia: New South Wales (NSW) Clinical Practice Guide for ... adults with post-acute sequelae of Covid-19 (PASC, Long Covid)

[rvallee]

Clinical practice guide for assessment and management of adults withpost-acute sequelae of COVID-19
Guidance for NSW health clinicians
https://aci.health.nsw.gov.au/__dat...ults-with-post-acute-sequelae-of-COVID-19.pdf

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Moved posts


No surprise there, Australian healthcare is screwing over Long Covid just as much as they are failing ME. Refusing to reform the BPS guidelines guaranteed failure here. We are beyond "not repeating the same mistakes" and are firmly in the "we now have to undo the harm done by repeating the same damn mistakes".

Just the same old incompetent debunked tropes, showing inability to learn from experience and stubborn refusal to acknowledge basic facts, blatant disrespect for patients and overall dereliction of duty:

 

[Snow Leopard]

No surprise there, Australian healthcare is screwing over Long Covid just as much as they are failing ME. Refusing to reform the BPS guidelines guaranteed failure here. We are beyond "not repeating the same mistakes" and are firmly in the "we now have to undo the harm done by repeating the same damn mistakes".

We are disappointed, but not surprised...

 

[SNT Gatchaman]

Link to the NSW Health PASC / Long Covid guidelines.

Moderate to severe obesity, measured as a body mass index greater than or equal to 30

This category does not appear highly represented in our NZ support group (either self-declared, or overtly from profile pic). By contrast we keep hearing the same introductory story: "I'm in my 20s/30s/40s/50s, fit and careful diet — I do 2 hours at the gym three times a week, play sports / run / bike ... etc ... and now I struggle to walk to the dairy/post box/bathroom."

In the document there is a prominent box for red flags, helpfully displayed in red, where they list the symptoms that should prompt urgent referral to the emergency dept. These are: focal neurological signs or symptoms; new confusion; palpitations or arrhythmia; severe, new onset or worsening breathlessness; syncope; unexplained chest pain.

That's going to capture approaching 100% of Long Covid patients as far as I can see, so EDs are going to be very busy. Yet immediately below this is a section on fatigue with the following gem, as noted in Eliza's Twitter thread above.

Post-viral fatigue is usually self-limiting, resolving within several months, but the risk of its chronicity is associated with biological, social, behavioural, cognitive and emotional factors. This fatigue has been compared to other post-viral illnesses such as myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). Females and people with a pre-existing diagnosis of depression and/or anxiety are overrepresented in patients with long-term fatigue.

Followed by:

A particular aspect of this appears to be post-exertional fatigue which poses challenges to treatment. The clinicians treating patients experiencing fatigue should validate and empathise with the patient’s suffering and adopt a biopsychosocial model for management. A supportive and experienced team validating and empathising with the patient’s experience is paramount.

I.e. feign empathy and deploy witchcraft disguised as medicine.

In the guidance for worsening breathlessness the flowchart promotes CTPA. This may of course show a major PE but is most likely to be normal, however only if indeterminate is the recommendation to go on to V/Q scan, so most won't get this test. This is the older imaging test, inhaling and injecting low-dose radioactive tracers. Not really used much for the last 20 years, but may be about to have its time to shine.

Many patients report that when they have had a VQ scan it's shown abnormalities indicating pathology at the small vessel level (which are undetectable by the standard CT pulmonary angiogram). Most are then put on anticoagulants and a proportion are finding this improves both their breathlessness and fatigue, "brain fog", etc. While these are only anecdotal reports on Twitter/Facebook, nothing is yet scientifically reported.

As a result of such reports I have seen patients tweeting a hope to have a clot diagnosed, so their LC symptoms might be improved with treatment. This is what the failed BPS model has brought us to.

 

[hibiscuswahine]

This category does not appear highly represented in our NZ support group (either self-declared, or overtly from profile pic). By contrast we keep hearing the same introductory story: "I'm in my 20s/30s/40s/50s, fit and careful diet — I do 2 hours at the gym three times a week, play sports / run / bike ... etc ... and now I struggle to walk to the dairy/post box/bathroom."

The way I see this part of the document is from a public health perspective, all socioeconomic groupings will get long covid (Australia may be slightly different to NZ due to different ethnic groups/food resource etc), NZ does have problems with moderate and severe obesity, a large proportion of the population is mildly obese with a BMI over 30. There may be a possibility that your NZ support group does not represent the entire population on many demographic factors.

 

[Sean]

That BPS brain worm sure is a persistent little bugger.

*sigh*

 

[SNT Gatchaman]

There may be a possibility that your NZ support group does not represent the entire population on many demographic factors.

Yes it's a biased sample, biased further by my subjective observation. I expect a Facebook-based support group will skew away from some age and racial/cultural demographics. Age likely misses the youngsters who are on Instagram or TikTok and the elders who may not even be online at all. I suspect some sociocultural groups will be missed almost entirely, not just from FB groups, with people suffering without any recognition or support, trying to keep their families going.

I wanted to highlight the disparity between what we're observing as patients and what is promoted in public health messaging. That the risks for Long Covid are said to be severe disease +/- hospitalisation, older, overweight/obese etc. The public are reading that and thinking they're free of risk and relaxed about getting infected. Pretty much every new person joining this year is expressing shock at their level of disability following trivial to (genuinely) mild infection, given that they were the polar opposite of the stated risk profile in all respects bar possibly biological sex.

This all seems like a rolling public health disaster. Some commentators have even suggested that in the future we may regard all the acute deaths as a mere footnote against the colossus of disability, disease and widescale cognitive impairment.

 

[Art Vandelay]

More on the appalling NSW Health LC guidelines:

 

[Sean]

This all seems like a rolling public health disaster. Some commentators have even suggested that in the future we may regard all the acute deaths as a mere footnote against the colossus of disability, disease and widescale cognitive impairment.

That is my view. We are at the end of the beginning of the Covid-19 story. The main act is only just starting, and it is going to be a long one.

 

[alex3619]

That is my view. We are at the end of the beginning of the Covid-19 story. The main act is only just starting, and it is going to be a long one.

I am not so sure its my view, but its definitely my worry. Its a bad scenario if it plays out like that, and huge numbers of people may be devastated. The world cannot afford more garbage research, and if the BPS crowd continues to go this way, and it becomes well known in the LC population, there could be major backlash. We can hope for the good side of that, while wishing the bad side is not as bad as we fear.

 

[alex3619]

Some commentators have even suggested that in the future we may regard all the acute deaths as a mere footnote against the colossus of disability, disease and widescale cognitive impairment.

I think we are almost there already. Its just not fully understood yet how bad it might be. However we are still not sure if LC is ME, or how well people recover over some time. Even with recovery in less than a few years, it will be much longer before we know the relapse rate, or what happens when someone with LC, even if recovered, gets another bout of Covid. These are just the known unknowns.

 

[Trish]

It seems to have mixed messages.
In the section on fatigue:

Assist patient to set a baseline for activities that do not exacerbate symptoms and energy conservation and pacing strategies. A graded return to activity is recommended, however this should be self-paced rather than imposed by the clinician to prevent post-exertion malaise.31 Referral to an occupational therapist may be appropriate.

But in other sections for things like cognitive dysfunction, breathlessness and muscle weakness it recommends aerobic exercise.
I haven't read it all, but how do they square these opposite approaches in a single patient with all these symptoms?
The general message seems to be towards increased activity and CBT/psychotherapy.

 

[rvallee]

It seems to have mixed messages.
In the section on fatigue:

But in other sections for things like cognitive dysfunction, breathlessness and muscle weakness it recommends aerobic exercise.
I haven't read it all, but how do they square these opposite approaches in a single patient with all these symptoms?
The general message seems to be towards increased activity and CBT/psychotherapy.

Also completely lacking in any details. It glosses over how to actually do this, seems to assume it's easy and quick when physicians have no idea to do that because of the misleading framing that makes those words completely confusing in context. They have the words but they don't understand their meaning, like someone mouthing the lyrics to a song in a language they don't understand.

Like "a return to activity is recommended" is basically equivalent to "it would be ideal if you could treat this patient successfully". It frames a goal as a process, which is the whole issue with how GET is applied with the belief that increased activity is the process of recovery, rather than its outcome.

And none of this advice is professional, this isn't why people go see professionals. It's a complete waste of resources to do things this way, to have professionals focus on the easy stuff people don't need help with, but the only objective here appears to wait it out until people move on and they can pretend it never happened.

 

[adambeyoncelowe]

PEM reduced to PEF again, I see! More proof these people don't understand LC or ME.

I think the contradictions Trish notes are because the GL was written by different people and they never went through it to make it fit. So most of it is BPS rubbish, with the occasional bit that sounds sensible, where the idealogues weren't watching as closely. They don't have good attention to detail, after all.