By David Tuller, DrPH
What’s going on with Aussie members of the graded exercise therapy cult? (Oops!—I meant the Royal Australian College of General Practitioners, a trade and professional organization. Sorry!) In 2019, I wrote about the organization’s guidance for “CFS/ME.” This guidance, published in 2015, was part of the group’s Handbook of Non-Drug Interventions (HANDI).
This month, HANDI issued a revised version that closely parallels the previous iteration–and let’s note that continuing to use the name CFS/ME rather than the more widely accepted ME/CFS is really giving the finger to the patient community. The main difference between the two versions? The term GET, which denotes incremental increases in physical activity, has been rechristened as “incremental physical activity.” I guess they thought retiring the term GET, which is toxic among patients, might make the guidance more palatable.
No worries for GET fanatics, however! Despite the name-switching, the guidance still cites the fraudulent PACE trial favorably and actually recommend the study’s GET manual for therapists and its counterpart for patients for more information about the intervention. The X account @ElizaCharley has provided an enlightening thread about the multiple issues with the new document.
This is the key message from the guidance:
“Incremental physical activity for CFS/ME includes the establishment of a patient-specific baseline of achievable and sustainable exercise or physical activity, followed by slow increments in the duration of physical activity.
“Incremental physical activity aims to gradually increase the patient’s ability to undertake physical activity and reduce their feeling of fatigue. How it works is not understood but it may prevent/ reverse the secondary physical deconditioning and exercise intolerance related to prolonged (relative) inactivity…A shared element in randomised clinical trials (RCTs) showing benefit is that the activity or exercise is slowly increased over time.”
Of course, the randomized clinical trials “showing benefit”—with PACE as the standard-bearer—are all unblinded studies relying for their claims of success on self-reported outcomes. The issue is not with the fact that the trials are unblinded; it can of course be impossible to blind interventions like GET—uh, incremental physical activity. But combining that with subjective measures is a recipe for generating an unknown amount of bias. Given that the positive findings in these studies are all extremely modest, it is likely that they are largely an artefact of the flawed study design.
No approved biomarkers exist for the illness in question. But plenty of standard objective measures of function are available—six-minute walking test, a step-test for fitness, and attendance at work or school, among others. Such measures have performed very poorly in studies of GET and CBT for “CFS/ME.” As a result, leading investigators in this field–like the PACE authors–have flatly rejected their own objective measures as irrelevant and not objective after all.
The guidance suggests that “a mild and transient increase in symptoms is explained as a normal response to an increase in physical activity.” Beyond that, it mentions post-exertional malaise by trying to explain it away. To wit:
“Surveys by patient groups of their members have suggested that incremental physical activity may be harmful to some people with CFS/ME and advocate against such programs. This is a valid concern, but 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 CFS/ME who are more vulnerable to more severe PEM.”
News flash: There is no evidence—at least none that I’m aware of–that the PEM reported after GET is due to poor implementation. This argument appears to have arisen solely as the response from the PACE team and its supporters to the reported harms from patient surveys. The idea that the GET yahoos–who have bamboozled ME/CFS patients for years with their fraudulent research and bogus arguments–are somehow engaging in cautious and responsible promotion of their beloved intervention is impossible to take seriously.
The RACGP also makes a distinction between patients diagnosed with looser criteria– like the 1994 Fukuda case definition, in which PEM is optional—and more recent definitions that require it. The guidance seems to suggest that it is only those pesky patients who qualify for the more stringent definitions that might have issues with GET. They’re the ones, I guess, said to be “more vulnerable to more severe PEM.”
But here’s the thing: PEM is the defining characteristic of ME/CFS, whether mild, moderate or severe. Those without PEM are likely to be experiencing “chronic fatigue,” which can be a symptom of anything, including depression and anxiety disorders. That is very different from the distinct clinical entity, or collection of related clinical entities, now referred to as ME/CFS. Since its 2015 guidance, RACGP has obviously learned nothing about this illness—or, more accurately, has chosen to learn nothing, The organization’s willful stupidity and ignorance is pathetic, embarrassing, and harmful to the interests of patients.