Thread by @ElizaCharley

It’s cute that the HANDI guide by @RACGP prides themselves on claiming they’re “evidence-based” 😂😂 When they still only have one entry for #MECFS and it’s “Graded Exercise Therapy” . 👀 Let’s dive in shall we?
1/ 🧵

#MECFS #StopTheHarm #LongCovidAus

racgp.org.au/clinical-resou…

First up, this is not targeted at any individual. The (mis)treatment of ME patients in Australia is systemic and institutional - spanning education to guidelines, welfare & insurance.

That said, individuals can make a positive difference. Will you be one of them? #StopTheHarm 2/

Today let’s look at the HANDI guide - a set of non-pharmacological interventions pby the Royal Australian College of General Practitioners.
It’s a great resource & doctors refer to it for “evidence-based” guidance…

> The only entry for ME/CFS is on Graded Exercise Therapy… 3/

So What’s the deal with GET for ME?

3 🔑: (1)GET purports the notion patients are ‘deconditioned’ & can gradually increase their activity back to health

(2) It rejects the idea that ME has a biological basis. The ongoing disease is attributed to patient behaviour & ‘beliefs’ 4/

Third thing you need to know about why Graded Exercise Therapy is controversial for MECFS is this:

(3) GET is based on the PACE trial - research now labelled “one of the greatest medical scandals of the 21st Century”. It’s also been called fraudulent 5/

meassociation.org.uk/2018/02/govern…

The state of play: the @RACGP in Australia has 1 suggestion in the HANDI guide for ME/CFS - used by doctors across the county - & it’s GET based on ‘fraudulent’ & ‘scandalous’ work? Unfortunately yes.

But let’s look at what the entry actually says.. 6/

racgp.org.au/clinical-resou…

No beating around the bush here. The @RACGP specifically appears to endorse the idea that ME is based on “deconditioning” - that resting has caused the disease, and that it is reversible through exercise.

(No mention of CPET studies, vascular damage, mitochondria…)
7/
Alt text

‘But isn’t there *potentially* a way for *some* (mild) patients to exercise safely within limits? Like Pacing?’

So glad you asked.

RACGP specifically (& dangerously) explains that’s they don’t mean a type of pacing.
They mean #pwME should push beyond their physical limits 8/

To support GET & to define the disease, RACGP ties a neat little bow with this disproven myth:

Fatigue symptom > ‘avoid’ exercise > deconditioned aerobic capacity & muscles.

This piece of fiction has been debunked e.g. studies comparing ME patients to sedentary controls 9/

The hallmark symptom of ME/CFS is post-exertional symptom exacerbation (or PEM).

Exercise can trigger PEM. By definition it can last days, weeks, years and can permanently impair people.

How does RACGP address this?
They call PEM ‘temporary’, ‘reversible’, & ‘normal’ 😳 10/

Note the specific (& incorrect) mention that PEM symptoms are not “signs of progressive pathology”.

This directly conflicts with the majority of research on ME/CFS - including that by Australian researchers.

And somehow the @RACGP calls this “evidence-based”. Outrageous. 11/

This bit titled “Adverse effects”, could also be called ‘How To Blame Patients 101’.

One survey showed 89% of Australian patients reported *worsening* from increased activity!

RACGP conclude ‘they probably didn’t do it right’🫠

I did a specialist program. It made me worse 12/

note: “Patient groups” are often vilified, “their members” could immediately cast the survey as negligible evidence in the eye of Aussie-medicine-educated readers.

Plus, passive voice on “finding is believed…” - by whom? According to what analysis? Where is your evidence?13/

Graded Exercise Therapy is inappropriate for people with PEM, e.g. #MECFS — so, I’m not going to get bogged down in the detail.

Suffice it to say: the Australian @RACGP directly & heavily relies on the fraudulent PACE trial as a “how to” guide 😮 14/ 🧵

racgp.org.au/clinical-resou…

This advice by the RACGP in the HANDI guide wildly concludes: “Increased rest is not recommended”*😳

& makes a claim that “only CBT and (GET) appear to produce meaningful benefit.”**🫠

*incorrect. #StopRestPace please.
** ME doctors, researchers, NICE &more, beg to differ! 15/

Dear @NHMRC, are you aware your name is printed on this @RACGP entry for Graded Exercise Therapy?

Interesting given the NHMRC review into #MECFS in Australia specifically emphasises the importance of rest & pacing (which the above entry appears to deride).

16/

Earlier this year, I wrote to both NHMRC and RACGP to try & further understand the state of reviews, guidelines and use of GET for #MECFS in Australia.

One declared no responsibility; The other repeated more myths & magical thinking with a heavy dose of condescension. Fin.
17/17