Eliza Charley Profile picture
Jun 2 24 tweets 11 min read
Australia, we need to talk — A brief critique of the @NSWHealth clinical practice guide, which dropped this week for #PASC #LongCovid: 🧵 1/n
This will be a critique from a patient perspective - I have viral-onset (non-Covid) longterm disease, #MyalgicEncephalomyelitis #MECFS - and it will be non-exhaustive because I, myself, am exhausted because of said disease. Let’s go: 2/
The @NSWHealth #LongCovid clinical guide matters because healthcare workers in australia will use this for advice on *what to do & what not to do.*
What they say directly impacts whether we *harm or help* thousands upon thousands of real people facing real hardship right now 3/
This clinical guide starts out strong - Although they use #PASC (& only mention #LongCovid as ‘colloquial’ nomenclature, which isn’t entirely accurate), they do reference the @WHO definition & acknowledge symptoms can ‘fluctuate or relapse over time’ 4/

aci.health.nsw.gov.au/__data/assets/…
But, friends, after initial hope [the authors did include a breadth of symptoms & co-morbidities such as POTS]…. They then quickly unravel into the classic Australian rhetoric of

“Deconditioning” & “psychological distress” #LongCovid @NSWHealth 5/

aci.health.nsw.gov.au/__data/assets/…
It can be observed that despite best efforts to appear factual & evidence based, much of the language & perspectives appear to have fallen prey to the longstanding medical bias in Australia towards GET, CBT & the disputed BPS model. e.g.. The..: 6/

aci.health.nsw.gov.au/__data/assets/…
e.g. The “Fatigue” section:
1. Explicitly endorses the BPS model —

The hypothetical ‘biopsychosocial’ model of viral-onset fatigue speculates patients real symptoms have a psychogenic cause - that is, “psychosomatic”, perpetuated by behaviour, emotion & thought patterns 7/ [alt] A screen shot of the NSW health clinical guide on Long Covid
continued.. 2. The Fatigue section mentions MECFS once - Without definition, explanation or reference - and invokes the disputed stereotype of depressed & anxious “females”.

Thus, imo, uncritically misjudging & mischaracterising both LC & ME patients in one swoop. 8/
[alt text] A screen shot of the NSW health clinical guide on Long Covid
Side note: they say “post-exertional fatigue” here, rather than the complex, debilitating, medically defined (& essential for ME diagnosis) symptom of PEM (post-exterional malaise), PESE (post-exertional symptom exacerbation) or PENE (post-exertional neuroimmune exhaustion) 9/
PEM can occur in Long Covid. Specialist researchers can measure it with CPET testing;
Hypoxia & lactic acidosis are further impacts;
it is often delayed after exertion; and, if left unmanaged, can cause injury.

We must define it well for patients! 10/

longcovid.physio/post-exertiona…
There’s more to say on the @NSWHealth PASC guide Fatigue section (pp. 8-9) - the emphasis on “deconditioning” & “loss of motivation”; and their endorsement of a certain notoriously controversial GET clinic -
but let’s skip to their take on CBT 11/

aci.health.nsw.gov.au/__data/assets/…
On p9 of the new #LongCovid clinical guide, Australian doctors are explicitly advised: “Patients should be referred to a clinical psychologist or neuropsychologist.” It is asserted “[CBT] has also been shown to be beneficial in reducing fatigue.”

No mention of gaslighting... 12/ A screenshot of page 9 of the New South Wales health clinica
Side note: There’s a long & sordid history of using CBT to convince patients there is no real ‘biological cause’ & their symptoms are ‘somatisation’ due to ‘illness beliefs’. (It differs from offering psych support to patients during a difficult time) 13/

ncbi.nlm.nih.gov/pmc/articles/P…
If the first section is characterised by psychologising fatigue,
then the remainder leans favourably towards “exercise” — Exercise is encouraged in nearly every section, with nary a mention on PEM & how it can cause longterm disability… 14/
@NSWHealth
aci.health.nsw.gov.au/__data/assets/…
Examples:
P.12 Breathless but scans clear?
> Physio & Exercise Physiology (who under Australian ME guidelines conduct notorious GET (graded exercise therapy).

Scans not clear? > Education on “the importance of exercise & physical activity” … 15/

aci.health.nsw.gov.au/__data/assets/…
Page 12 explains “Pulmonary rehabilitation offers exercise assessment, prescription, supervised exercise training,& advice on the gradual return to exercise & physical activity.”

At no point does it say they screen patients for #MECFS or #PEM or warn GET can make you worse.. 16/
P17 Depression or Anxiety? There’s a rather good discussion, but then when it comes to treatment? > “Aerobic exercise” …
(comes with no warning about potential decreased functioning or increased symptoms as an output of exercise for some patients, or how to spot this.) 17/
Joint and muscle pain? Page 17 hosts a bold (& unreferenced) claim that “most instances…will resolve within 2-3 months.”

[Note: this same document is for patients experiencing symptoms after at least 2-3 of initial infection….( pg 1)]

But, still: “Exercise prescription” 18/
Functional mobility impairment? Page 18 explains this could be “deconditioning” and suggests “rehabilitation” or a social “exercise group” to “improve adherence and motivation”.

Again, can’t see a mention of PEM 19/
For “palpitations and chest pain”, thankfully, no mention of exercise. However…:
Despite this being a common and debilitating Long Covid symptom, the authors claim no “serious pathology” and go on to suggest - you guessed it - “deconditioning” and “psychological distress” 20/
🧵⬆️ This thread has been a non-exhaustive critique of the new #LongCovid clinical guide from @NSWHealth. It’s not all bad. But I do hope you can see how the rhetoric of “deconditioning” and “psychological distress” is problematically entrenched in medicine in Australia. 21/
I do not see how a clinician could read this guide and *not* prescribe graded exercise and cognitive behavioural therapy, which may only serve to exacerbate symptoms, prolong suffering, and prevent appropriate care. 22/

aci.health.nsw.gov.au/__data/assets/…
Unfortunately, despite best efforts by a few LC-literate clinicians, my current assessment of @NSWHealth #LongCovid clinical guide is that it could lead to harm & injury of patients - especially the non-hospitalised - and may contribute to the “in your head” narrative. 23/FIN
Cc @nswaci Your #LongCovid guide for clinical practice is highly problematic. Please see above.

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More from @ElizaCharley

May 25
ME patient Results: 3 out of 3 biomarkers tested - 🩸 microclots, endothelial damage and platelet markers all abnormal. Treatment can begin straight away. 1/n
It feels quite vulnerable to share this here so publicly but as many of you know I’ve been on a multi-year journey to be more public with my story and with the vital calls & campaigns for better treatment of ME and Long Covid (especially in Australia). 2/n
I have benefited greatly from brave patients sharing their stories online, and from clinicians & researchers banding together with patients online. 3/n
Read 8 tweets
Apr 3
Despite best efforts of many brilliant minds, government funding for Long Covid in many countries seems to continually be directed towards studying ‘lifestyle’ & ‘wellness’ factors. — As someone who has had relapsing-remitting MECFS for 12 yrs, I can share a few experiences:🧵1/6
1. Stress - Over many years, I’ve experienced grief for the death of family members, lost suddenly & slowly. I’ve worked stressful jobs. And I’m divorced.

These difficult times have never correlated with my disease onset, relapse, or severity.

Infection has, every time. 2/6
2. Weightloss - I can’t believe this is being studied in relation to Long Covid, but here we are.

My weight has fluctuated over the years up and down within an approx range of 25 kgs (55 pounds).

At no point has it correlated with disease onset, relapse or severity. 3/6
Read 8 tweets

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