Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines

Thanks @Nightsong

Some comments

It is recommended that the guideline provide statements about managing additional comorbidities that may be experienced by patients, including mental illness in the context of ME/CFS.
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If a patient has depression or something else, the guideline should refer to the relevant guideline. There is no need to explain how to manage depression in an ME/CFS guideline. What is important is to acknowledge the difficulty of living with the condition, and to encourage health professionals to provide practical support make life easier.

The guideline may consider covering quaternary prevention – the avoidance of harm from medical interventions and medical advice.

Medical interventions might include the use of unapproved, poorly evidenced or low value therapeutics. These interventions may cause direct harm, harm through lost opportunities for better interventions, costs, inequity of access, and negative impacts on the health system.

Whilst patient choice is also important, it is equally important that patients are fully informed about the best available evidence-based care, including which treatments are still experimental, and those that should be avoided or which represent low value care.
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First I've heard of 'quaternary prevention'. I made a similar point in my response to the NHMRC survey regarding quack treatments. The problem is that many doctors don't realise just how much is poorly evidenced, ineffective and potentially harmful.

Exercise interventions

The debate between those that support incrementally increasing physical activity and those that support staying well within an energy envelope requires a dispassionate examination of trial evidence, particularly the multiple long-Covid trials (388 registered trials)viii that are emerging and are likely to provide additional evidence in the near future.

Surveys by patient groups of their members have suggest that incremental physical activity may be harmful to some people with ME/CFS and advocate against such programs. It is possible that these experiences may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of ME/CFS who are more vulnerable to more severe post-exertional malaise.

It will be important that implementation of any treatment involving an increase in physical activity is very sensitive to these concerns and the guideline must raise awareness that many patients and carers will be aware of the strong advocacy specifically against such programs. Trust and acknowledgement of these concerns, with appropriate caution will necessarily be a crucial part of guideline recommendations.
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Case in point (the poorly evidenced, ineffective and potentially harmful) - exercise interventions. That section is basically a rewording of the HANDI guideline on exercise therapies for CFS. I am constantly amazed that people who should know better don't. Perhaps they don't bother to look at the actual studies and just assume the HANDI Guideline can't be wrong.
 
Nightsong said:
Link | Full letter (PDF)
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Surveys by patient groups of their members have suggest that incremental physical activity may be harmful to some people with ME/CFS and advocate against such programs. It is possible that these experiences may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of ME/CFS who are more vulnerable to more severe post-exertional malaise.

It will be important that implementation of any treatment involving an increase in physical activity is very sensitive to these concerns and the guideline must raise awareness that many patients and carers will be aware of the strong advocacy specifically against such programs. Trust and acknowledgement of these concerns, with appropriate caution will necessarily be a crucial part of guideline recommendations.
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That is so wrong it's shocking, but sadly not surprising. It has been clearly shown in surveys that GET implemented under the guidance of so called specialist therapists has been just as bad as any other GET. The only appropriate caution is not providing any GET or pacing up programs.
 
This is an empty letter. I don't know why they bothered writing it, since they clearly didn't bother thinking about it.
Medical interventions might include the use of unapproved, poorly evidenced or low value therapeutics. These interventions may cause direct harm, harm through lost opportunities for better interventions, costs, inequity of access, and negative impacts on the health system.
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Aside from 'approved', this actually applies to the psychobehavioral and rehabilitation models. They have in fact done those things. They have been a miserable failure.

Which they then sort of acknowledge later on, still trying to push their failed GET, still doing the exact "just asking questions, we need to know more" that may as well be RFK Jr talking about how vaccines haven't been tested enough to know for sure. Everything they want has been tested 10x more than needed. It's a bust, and they still won't let go of it.

Plus the whole "may not have been properly supervised" is so damn insulting. Based on what?! People who don't understand a problem and have no solution cannot reasonable 'supervise' that thing over people who know better than they do.

Weak. Pathetic, even.
 
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A caution regarding low-value care alone would have been appropriate but the submission offers no countervailing encouragement of research or symptom-focused care. The framing is of patients' frustrations leading to poor choices ("stress and frustration. . . can lead [patients] to resort to low-value care options") but completely ignores the context of the extremely poor-quality conventional medical care & gaslighting that patients routinely experience.

I had never heard of the term "quaternary prevention" either but it seems to be mainly used in the context of so-called over-medicalisation/demedicalisation, e.g.

Quaternary prevention: a balanced approach to demedicalisation

Quaternary prevention: an evidence-based concept aiming to protect patients from medical harm

As to the suggestion that exercise-related evidence from "multiple long-Covid trials (388 registered trials)" should be considered - most of these are highly heterogeneous & one can't extrapolate from wide LC case definitions, like the popular & very broad WHO definition, to ME/CFS.

There is also an implication that harms from exercise therapies result from "inappropriately planned" interventions, which is patient-blaming; these programmes are almost exclusively promoted by orthodox medical systems & practitioners and there is no genuine, organic patient demand for them. They have had decades to work out how to appropriately plan such interventions and yet the evidence of harm keeps stacking up.
 
Nightsong said:
"What's going on in Australia's chronic fatigue guidelines" (Medical Republic, 6 May 25):

https://www.medicalrepublic.com.au/whats-going-in-australias-chronic-fatigue-guidelines/116523

Mentions the RACGP submission.
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“The debate between those that support incrementally increasing physical activity and those that support staying well within an energy envelope requires a dispassionate examination of trial evidence, particularly the multiple long-Covid trials (388 registered trials) that are emerging and are likely to provide additional evidence in the near future,” the college said.
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Will the college be able to put aside their feelings then, and acknowledge that the trials are so flawed that they can’t support the rejection of the null hypothesis (that GET does nothing) even if they had positive results, and that the results were in fact negative?
The RACGP also noted that acknowledging patient concerns around exercise therapy would be a crucial part of formulating the guideline recommendations
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Maybe we should also acknowledge the college’s concern that they struggle with being proven wrong so it’s difficult for them to change their behaviours, and we can’t expect too much of these poor doctors?
 
Utsikt said:
Will the college be able to put aside their feelings then, and acknowledge that the trials are so flawed that they can’t support the rejection of the null hypothesis (that GET does nothing) even if they had positive results, and that the results were in fact negative?

Maybe we should also acknowledge the college’s concern that they struggle with being proven wrong so it’s difficult for them to change their behaviours, and we can’t expect too much of these poor doctors?
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I had to go and check the thread title was me/cfs after I read that first quote which was trying to suggest the long covid re-do of get trial (by the sounds) should be some sort of clincher in ‘the debate’

I agree it sounds like people who’ve already got a particular certainty in their mind that might indeed then be looking to be selective about what ‘evidence’ gets used to back up their stance when you see this kind of priming
 
Nightsong said:
"What's going on in Australia's chronic fatigue guidelines" (Medical Republic, 6 May 25):

https://www.medicalrepublic.com.au/whats-going-in-australias-chronic-fatigue-guidelines/116523

Mentions the RACGP submission.
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The saga began with a 2015 Cochrane review which concluded that exercise therapy probably had a positive effect on fatigue in CFS patients.
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Uh. No. I mean, it literally talks about the 2021 NICE guideline in a following paragraph, while the 2007 guideline had that explicit recommendation, based on nothing at all.

Yikes. So many mistakes:
The update was unexpectedly cancelled in December 2024, after an independent advisory group had spent five years reviewing the guideline
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They did not spend 5 years reviewing the guideline. It's not even a guideline, it's a review. And they spent some of those 5 years, bureaucratically interrupted to accommodate tantrums, performing a brand-new review.
The only existing Australian guideline for ME/CFS came from the RACP and was published in 2002.
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Well, then, it didn't begin in 2015, now did it?
In its response to the NHMRC’s scoping survey for the clinical practice guideline, the RACGP stressed that the questions over exercise therapy should be settled by evidence alone.
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Yeah, well they're lying, because there is no evidence for it. Good grief, this profession is supposed to be careful about details.
“The debate between those that support incrementally increasing physical activity and those that support staying well within an energy envelope
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This is not a 'debate', and this is not the nature of the controversy. Good grief this is weak.
“It is possible that these experiences may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of ME/CFS who are more vulnerable to more severe post-exertional malaise.”
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Liars. Liars. LIARS!
 
Ultimately, the UK altered its NICE guidelines in 2021 to specifically recommend that people with mild to moderate CFS not be offered graded exercise therapy – going directly against the 2015 Cochrane recommendation.​

Not just NICE going against Cochrane and GET.

Getting exercise guidelines for myalgic encephalomyelitis and chronic fatigue syndrome right will need a ‘dispassionate examination of trial evidence’, the RACGP says....

In its response to the NHMRC’s scoping survey for the clinical practice guideline, the RACGP stressed that the questions over exercise therapy should be settled by evidence alone.

“The debate between those that support incrementally increasing physical activity and those that support staying well within an energy envelope requires a dispassionate examination of trial evidence,...” the college said.​

Going to depend entirely on what methodological standard is used to do a 'dispassionate examination of the trial evidence', including safety. In particular the status given to uncontrolled subjective measures.

“Surveys by patient groups of their members have suggest that incremental physical activity may be harmful to some people with ME/CFS and advocate against such programs.

“...possible that these experiences may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of ME/CFS who are more vulnerable to more severe post-exertional malaise.”​

1. What evidence do they have for these possibilities, and

2. How much time have they had to robustly test them?

None and plenty.

(Note the language and framing they use throughout: Surveys by patient groups of their members, suggest, may be, likely, some, advocate, dispassionate,….)

If GET is not delivering in the exercise advocates' own body of trials, then how such a non-therapy is administered outside a trial doesn’t seem relevant.

And then there is this:

...particularly the multiple long-Covid trials (388 registered trials) that are emerging and are likely to provide additional evidence in the near future,​

What do LC trials have to do with ME/CFS? For a start they are likely to include a patients with a range of outcomes from LC, only one of which will be ME/CFS. I predict a persistent failure to differentially diagnose, adequately stratify, and take all that into proper account in these trials.

How would these studies negate the failure of ME/CFS specific exercise studies to deliver any meaningful benefit?

What about non-exercise trials and studies also underway, particularly those specific to ME/CFS physiopathology? Are they going to be taken into account?

The update was unexpectedly cancelled in December 2024, after an independent advisory group had spent five years reviewing the guideline.​

IIRC the IAG were effectively shut out of the process early on, and didn’t get much actual reviewing done.

Etc.

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Beyond exercise therapy, the other big issue that Ms Wilson identified was that the current Australian guidelines do not feature post-exertional malaise as part of the diagnostic criteria, whereas those from other countries do feature it.​

Important issue.
 
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Turtle said:
Don't Australian doctors have to take an oath not to harm patients?
When GET can cause tremendous harm, why is there still a discussion about it?
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Oaths are just words to make people feel good about something. They don't matter in real life, have about as much power as a poster on a wall.

This is why laws and regulations exist. So the question really is about why the laws and regulations that should prevent this not being enforced? Why don't facts matter here?

And of course the simple answer is that the people failing to enforce those are the people who are supposed to enforce them. No system can withstand such fundamental failure, it just all breaks apart.
 
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