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 Patients and advocates have long argued that those guidelines are outdated.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 the 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.)