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.
Thank you for responding quickly to this outrageous choice by the RACGP. It seems Australia is an island with a fantasy disease created to keep the Fatigue Clinic model in business… regardless of the untold harm this will cause ME, CFS, Long Covid or any patient with exertion intolerance.
We need the type of journalism George Monbiot has recently produced regarding the UK model. An expose that follows the money. It’s time to end the eminence over evidence stranglehold and follow the science.
Thankyou for the quick retort to this infuriating stupidity. Just how do we illustrate that those making these decisions are so profoundly dismissive of reality, scientifically proven reality.
t’s so saddening to read this latest backwards step and stinks of the administration getting ready to deny the long covid claims, or greedily suck the funds out of them by crafting a treatment.
Amazing article David, and so quick to respond. Thankyou from the bottom of my heart.
These people apparently believe their own claims that thoughts drive absolutely everything – so changing names is supposed to make people think differently about the thing, thus changing the outcome. They think we are sick because we think we are, and the intervention doesn’t work because we think it doesn’t. Changing the name to try to make us think more positively about it should make it work, right? I am convinced this is why they are constantly coming up with happy little acronyms and endlessly changing the name of anything that didn’t work.
New Name=New Thoughts=New Thing. Problem solved!
They can’t change the underlying idea behind it all though, because that would mean all the losing all the gains that have come to them through that idea: money, power, position. Change the idea, lose the gains. Unthinkable.
Patients are suffering? We are what we think, so we deserve it. If we could only learn to love Big GET our struggles would be over.
Thanks for continuing to shine the light and push back on this nonsense, David!
Thank you, David, for looking into this. I was shocked to see this update was still referring to the flawed PACE trail. Many Australian patients myself included are being negatively impacted by the outdated 2002 RACP guideline and the RACGP Handi Guide. We need our medical professionals to have up to date and valid information about how to diagnose, treat and manage our symptoms. I have found it difficult to gather the evidence I need for applying for the National Disability Insurance Scheme and the Disability Support Pension. The Handi Guide update will not help with this and is not aligned with the 2019 NHMRC Report on ME/CFS, recommendations from the Long Covid Enquiry and the 2021 UK Guidelines. Patients need their medical professionals to have specific information about their illness especially when we have comorbidities. Many Australian ME/CFS patients shared their stories to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. I am grateful that the very small lettering in the note at least directs readers to a CDC page spelling the different criteria but do not understand why this acknowledgement of the ICC and CCC has taken so long and is being done in such an indirect way. I needed my medical professionals to have knowledge of the ICC and CCC and other helpful resources when they were first published.
Certainly the tenacity of these exercise and psychotherapy cultist is remarkable in hanging on to bad research that at best shows a slight transient, probably clinically irrelevant, uptick in how patients report their illness, which disappears over time and which is not backed by objective evidence.
Certainly it feels like across the world we are playing a game of ‘whack a mole’. This is so desperately sad as GET by whatever name can permanently worsen participants’ disability.
Why are behavioural and psychological interventions not subject to the same checks and balances as drug use? Had GET been a drug it would have been banned years ago: no objective evidence that it works and decades of reported adverse effects.
Peter Trewhitt commented:
“Why are behavioural and psychological interventions not subject to the same checks and balances as drug use? Had GET been a drug it would have been banned years ago: no objective evidence that it works and decades of reported adverse effects.”
I think we need to be emphasizing the many ways in which the BPS model, or the current distortion of it, inflicts iatrogenic harm on patients. The BPS model has pushed a narrative to doctors that they will very likely cause iatrogenic harm by over-investigating and overtreating unexplained physical symptoms and that misdiagnosis rates are low, but the evidence on misdiagnosis is very limited and poor and misdiagnosing physical problems as mental health problems is far from risk-free. Apart from the risks of not treating the true pathology, there are the risks of causing harm through inappropriate exercise regimes and psychological treatment for patients who have no mental health problems. There are significant psychosocial implications of being given a psych diagnosis with respect to work and important relationships and there’s also the risk that when psychological intervention doesn’t work the patient will be prescribed inappropriate and potentially very harmful psychiatric drugs. Our doctors should be taught to consider all the above iatrogenic risks of the BPS model in relation to the management of unexplained physical symptoms and conditions, like ME, that have historically been categorized as MUS or ‘functional somatic’ syndromes. Iatrogenesis works both ways and both ways can cause physical harm, but I’d say that the mental health route may be way more risky than the physical health route in terms of psychosocial harms. If doctors truly believed in the BPS model then this should be an important consideration for them.
Thanks for this, David.
The endless ongoing denial of the RACGP is wilful, grotesque, and cruel.
This latest bucket of shit is only going to do yet more appalling damage, and further delay resolution of this problem in Australia.
Utterly disgusted. 🙁
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“Had GET been a drug it would have been banned years ago: no objective evidence that it works and decades of reported adverse effects.”
Had GET been a drug, it would never had made it out of initial trials.
Perhaps someone could put together a video that gives clear examples of the many different TYPES of iatrogenic harm that can befall ME patients through mismanagement by their doctors pushing them down the GET/exercise and psychotherapy/psychiatry path? I know that I’ve seen good individual examples in the public domain but, as far as I can see, they’re not all brought together in one place. These are some of the types of harm that I think should be emphasized – harm from:
– GET/exercise therapy
– incorrect suggestions/assumptions regarding the patient’s psychology (by self and others) and their impact on the patient (including on self-perception), their family, their friendships, their patient/doctor relationship, their work environment/employers etc (with examples of each type).
– suggestions and approaches delivered via psychological therapy
– being prescribed psychiatric drugs (after failed psychotherapy or instead of psychotherapy)
– not being able to adequately explain health problems to an employer or to get the workplace adjustments/dispensations that were needed.
I’m imagining a shortish instructional video with “iatrogenic harms” in its title that makes the different types of harms and the seriousness of those harms very clear. It’s just an idea. It’s not something that I could do, or I would, but the ME community is multitalented and I imagine there are people who could make a very good job of it.
Thank you for responding to this shocking update to the HANDI guide. As you say, the RCGP has chosen to learn nothing and, in the absence of any other medical guidelines since the abysmal 2002 RACP guidelines were withdrawn but not revised, and with the 2019 NHMRC report recommendations and the Federal Govt 2023 Long Covid report recommendations not implemented (which included ME)
this is all doctors have for official reference in Australia. Appalling state of affairs for people with ME.
I think the RACGP and Lloyd might have been giving each other a “HANDI” when they came up with this bullshit.
That which we call GET
By any other word would stink as …