By David Tuller, DrPH
When it comes to treatments for ME/CFS, the Royal Australian College of General Practitioners (RACGP) has long endorsed the graded exercise therapy (GET)/cognitive behavioral therapy (CBT) approach. Last April, the organization published an “updated” article in its Handbook of Non-Drug Interventions (HANDI) advocating “incremental physical activity” for what it called CFS/ME. “Incremental physical activity” was the kindler, gentler name the RACGP has adopted for GET. (I wrote about the HANDi article here.)
Now the college has submitted a similarly problematic response to the scoping survey issued by Australia’s National Health and Medical Research Council (NHMRC), which is overseeing the development of new ME/CFS clinical practice guidelines. For decades, the country’s primary guidelines have been a set published in 2002 by the Royal Australian College of Physicians (RAGP). Patients and advocates have long argued that those guidelines are outdated.
Last June, the office of Mark Butler, the minister for health and aged care, announced that it was allocating $1.1 million (in Australian dollars) for the development of new guidelines. The media release noted that “the Australian Government has heard the calls for better support for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), long COVID and related conditions.” According to the announcement, the parties involved in the development of the guidelines included two major patient advocacy organizations—Emerge Australia, based in Melbourne, and ME/CFS Australia, based in Adelaide—along with the RACP and RACGP.
Minister Butler himself declared the following: “I’d like to thank people with ME/CFS for their ceaseless campaign to be heard and believed in the face of, frankly, years of doubt and disregard…The development of new Australian clinical guidelines will provide GPs and their patients with better diagnosis, treatment and care.”
(Patients had been concerned about the impact of a change of government on the guideline development process. However, the Labor government fought off a challenge from the Trumpist forces in a rousing victory early this month.)
The scoping survey, which was released in February, was considered an essential effort to seek input from patients and other stakeholders in the process. The response from the RACGP, dated April 30th, noted the following about “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) 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.”
This statement essentially serves to undermine the RACGP’s position. A “dispassionate examination of trial evidence” would find that the benefits claimed by the GET/CBT ideologues are generally marginal and clinically insignificant and come from seriously flawed trials. Regarding the Long Covid trials, those testing psycho-behavioral interventions frequently include similar lapses and yield similarly disappointing results, as I have noted many times.
The claim that the harm reported from GET and exercise programs might be attributable to the actions of practitioners “without appropriate experience” is a standard rationalization in this domain—in fact, it is the exact same point made in the HANDI article. However, the argument is not founded on any actual evidence. The clinical trials themselves demonstrate that, whatever their potential harms, the interventions confer minimal or no benefits when assessed at a population level.
The letter includes an interesting section on “quarternary prevention”—a term I hadn’t heard before. Here’s the section:
“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.”
On the face of it, this sounds like reasonable advice. Of course patients should not be offered “poorly evidenced” and potentially harmful treatments. The irony is that the psycho-behavioral approach promoted by the RACGP is the epitome of the “poorly evidenced” strategy here and itself represents “low value care”—despite any contrary assertions. Patients do need “quarternary prevention,” but from the treatments favored by the RACGP.
This week, an Australia medical news site called The Medical Republic covered the issue. The recent article, titled “What’s going in Australia’s chronic fatigue guidelines,” quoted Anne Wilson, the CEO of Emerge Australia, as well as the letter from the RACGP. According to the article, “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.” (The article contains some inaccuracies. I mean, the whole “saga” did not begin “with a 2015 Cochrane review,” for starters.)
Alem Matthees as you know,
is Australian and helped to release some PACE information in Britain some years ago in court.he is very ill i believe
Anil van der Zee on x / twitter as you know him too has made a subtitled film in dutch about medics who have changed their mind about dismissing and disbelieving in ME after they get similar or same illness themselves and become bedbound.
We havn’t seen any better action/treatment/care since NICE guidelines have changed in 2021.
I feel that we are not going anywhere but round and round and round in circles for decades
Thank you for all you have done to help these past 10 years or so
It’s like saying Thalidomide was safe but people may have got the wrong dose, used too much in a short time (overdose) or blame something else. All without any evidence to justify these excuses nor quantify contributions to adverse outcomes for each excuse.
The RACGP response devalues patient experience like any good gaslighter does. Remember that the RACGP, as most colleges/associations are, infact a trade union of the doctors (or relevant health professionals) so deliberately/unintentionally wish to shield their members from accusations/liabilities of malpractice. The discipline of doctors/nurses/AHPs typically requires the support of (atleast a few) fellow members of same group/college/association. Why would they start punishing others for what they themselves can also be found guilty of?
Thank you for highlighting the archaic, negative attitudes of the RACGPs to the government’s promise of ‘better treatments, diagnosis and care’ for people with ME’ by updating our harmful medical guidelines. We have a huge fight ahead if they are ignoring our input in the scoping survey, especially on exercise and PEM.
If they want to compare or conflate ME with Long Covid, then perhaps they should reflect on the rise in economic inactivity due to ill-health that the current approach to Long Covid seems to be having on economies around the world (see the presentation here -https://virology.ws/2025/03/20/trial-by-error-our-presentation-at-the-university-of-new-south-wales/ from 19.50) and consider whether they really want to risk carrying on regardless. To do so, sounds like insanity to me.
A letter full of weasel words. “Quaternary prevention” was originally designed for patients who had “illness without disease”, and historically it often involved managing ‘psychosomatic’ symptoms with programs like exercise and psychological interventions.
Based on what they’ve written in the letter, I believe it’s a way for RACGP to imply that ME/CFS is an “illness without a disease”, and that it should not be “over-medicalised” by doing things like investigating it with laboratory tests, and treating symptoms with medication, because it will encourage the patient to believe their symptoms are real and require medical treatment. Instead, RACGP wants patients’ ‘false illness beliefs’ to be treated with non-medical interventions like GET.
They’ve written in their letter “Unnecessary medications, testing, or procedures represent low value care and can cause more harm than benefit.” … which is wild considering just a few paragraphs above that they were saying that ME/CFS is under-diagnosed and is accompanied by multiple co-morbidities that put a high illness burden on the patient. Their way to manage an under-diagnosed, burdensome chronic disease seems to be to put their heads in the sand – if it isn’t diagnosed, it doesn’t require treatment, so it isn’t a problem (for them and the rest of the medical system). Their main problem becomes, as they put it, managing “patient frustration due to a lack of a definitive diagnosis and/or clear treatment pathways”.
Perhaps this patient frustration could be effectively managed by creating a definitive diagnostic criteria for ME/CFS and developing clear treatment pathways … exactly what the NHMRC is trying to do.
After all that’s known today about ME/CFS and PEM, it is obvious, that exercise is harmful and can worsen symptoms significantly- and permanently.
It’s sinply irrelevant whether the one defining diagnostic marker has been found or not. Nobody will tell a person with migraines to exercise during flare ups- despite the fact that there is no diagnostic marker neither.
I am in favor of filing criminal complaints against those ignorant practitioners. It is not only neglected medical support, it is causing physical injury. Ignorance is no excuse for criminal negligence.
Sorry I could not find a way to share this link from the BMJ, though you will likely have seen it already.
M.E. community already have a lot to say about this.
https://www.bmj.com/content/389/bmj.r977?fbclid=IwY2xjawKR1MNleHRuA2FlbQIxMQABHkYcUB0DWIpEwGBTWAqO4XORZZ4aoEa7xtejv44FYlPq-3TfN8w1kTVaLHwu_aem_lnVuspCt3tQOGA82akZKOw