Wolf in Sheep’s Clothing
Graded Exercise Therapy disguised as Incremental Physical Activity
In the latest update of Australia’s RACGP guide for General Practitioners regarding ME/CFS, troubling alterations have been introduced in the terminology and approach to diagnosis and treatment. The title shift from “Graded Exercise Therapy” to “Incremental Physical Activity” for chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) reflects a departure from previous terminology. However, this shift aligns with Australia’s lack of a definitive clinical guideline for ME/CFS, with diagnosis primarily reliant on symptom assessment and the exclusion of other conditions, lacking an internationally agreed-upon definition.
Despite acknowledging newer “definitions,” the guide fails to address crucial aspects such as post-exertional malaise (PEM), a hallmark of ME/CFS. Instead, it erroneously suggests that newer, narrower definitions might exclude many patients with chronic fatigue issues. This assertion contradicts established criteria like the Canadian Consensus Criteria and the International Consensus Criteria, which do account for significant physical and mental fatigue.
The RACGP’s emphasis on incremental physical activity appears to disregard the specificity required in ME/CFS management. Moreover, it inaccurately discusses PEM in the context of Graded Exercise Therapy, despite mounting evidence against its efficacy. The guide fails to acknowledge the distinct needs of individuals with well-defined ME/CFS, despite claiming applicability to a broader group.
The RACGP HANDI working group’s characterisation of the profound impact of heightened activity on our lives as merely “mild and transient” is deeply troubling. Moreover, their tendency to dismiss more severe outcomes as a result of “inappropriately progressed & planned programs” fails to acknowledge the long-term or permanent harm experienced by numerous patients from exercise/activity programs similar to those administered by specialist-run clinics, which align with the ones endorsed by the RACGP HANDI guide.
Emerge Australia posted an immediate response and stands with ME/CFS patients, advocating for their concerns to be heard and emphasising the necessity of evidence-based approaches in healthcare policy and practice.
“Emerge Australia shares the concerns of ME/CFS patients, carers, researchers and informed clinicians with the release of the updated RACGP HANDI Guide, “Incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis.
In 2024, ME/CFS patients should not be subjected to harmful and outdated practices.
In particular, we note that the updated HANDI guide:
Isn’t evidence-based. It ignores both the lack of effectiveness of GET and the physiological evidence for post-exertional malaise (PEM), for which GET is contraindicated
Downplays the risk of harm to people who experience PEM
Claims that long term rest is not recommended, which is contrary to all other clinical guidance for ME/CFS
Continues to rely on widely discredited PACE trial as a guide for implementing GET
Our team is working on a multi-faceted response to ensure that the concerned voices of patients are heard by the RACGP, the Health Department and the Health Ministry, and to emphasise that clinical guidance must be evidence-based. We will provide further updates as we progress.”
A comprehensive reanalysis has discredited GET research from the PACE Trial and Cochrane Review. This therapy promoted as “evidence-based,” by the RACGP not only fails to show long-term effectiveness, but studies now indicate they can actually trigger post-exertional malaise (PEM), causing long-term or permanent harm to those experiencing it.
Critically, the guide overlooks significant scientific advancements and international guidelines, neglecting updated diagnostic criteria and biomedical findings indicative of ME/CFS. This oversight suggests a propensity to endorse outdated approaches, potentially at the expense of patient well-being.
Addressing concerns about the adverse effects of graded/incremental exercise, the RACGP employs strategies of belittlement, denial, and deflection. Rather than engaging with nuanced research on ME/CFS pathophysiology, the guide resorts to simplistic explanations like “deconditioning” due to prolonged inactivity. It downplays the long-term consequences of exercise, dismissing patient experiences and advocacy while sidestepping culpability and the need for substantive change.
The continued reliance on Graded Exercise Therapy, under the guise of Incremental Physical Activity, is concerning, especially given mounting evidence against its efficacy and potential harm. It’s imperative that clinical guidance aligns with evidence-based practices and prioritises patient well-being.
