By David Tuller, DrPH
Some Australian members of the GET/CBT ideological brigades have published yet more nonsense and drivel about €œgraded exercise therapy€ as a treatment for ME/CFS, or what they are still calling €œchronic fatigue syndrome.€ The article, simply called “Chronic fatigue syndrome: graded exercise therapy,” is in a peer-reviewed journal from a reputable publisher yet is full of unsupported and questionable claims. It references the PACE trial without discussing the developments that have undermined the trial€™s credibility, including published re-analyses that refute the core findings. In fact, it reads as if the authors are unaware that the entire debate has been transformed in recent years–which isn’t surprising, because it is basically a reprise of material created in 2015 by the Royal Australian College of General Practitioners.
The lead author, Professor Paul Glasziou of Bond University, is a general practitioner and director of the university€™s Institute for Evidence-Based Medicine. He was also the senior author of a published protocol for a Cochrane €œindividual patient data€ review of exercise therapy for so-called €œchronic fatigue syndrome.€ That protocol was withdrawn once Cochrane declined to publish the full individual patient data review, which was known to have received scathing reviews from those outside the usual orbit. (This review was not the regular Cochrane exercise review that used aggregated published data from the included studies rather than the raw individual unpublished data from the included studies. A revision of that regular review is expected to be published soon.)
Patient and advocacy groups in Australia have for years criticized the RACGP for its continued advocacy of the GET/CBT paradigm. For unknown reasons, a SAGE journal called InnovAiT: Education and Inspiration for General Practice, has now decided this dated RACGP guidance deserves wider exposure. I assume the article passed some sort of peer review, but perhaps it was reviewed by like-minded colleagues of the authors.
The very first sentence is problematic: €œGraded exercise therapy (GET) aims to increase a patient€™s ability to undertake physical activity by preventing/reversing the physical deconditioning and exercise intolerance related to prolonged (relative) inactivity.€ It is of course true that prolonged inactivity can lead to deconditioning. But there is no legitimate or valid evidence that patients with the illness in question are experiencing their devastating symptoms because of deconditioning. This theory has been promoted for decades by the biopsychosocialists and provides the rationale for GET, but it has not been borne out by research.
There is also no proof that the so-called €œexercise intolerance€ experienced by patients is reversible through GET. Professor Andrew Lloyd, an infectious disease doc at University of Sydney and the country€™s self-styled €œleading light€ for the illness, is a proponent of the €œcentral sensitization€ hypothesis, the unproven notion that a brain glitch is leading to a kind of over-interpretation or exaggeration of routine fatigue signals. That appears to be Professor Lloyd€™s current rationale for his insistence that treating the illness requires gradually increased exposure to the stimulus in question, in this case, activity. That approach might work for arachnophobia but there is no reason to assume it is appropriate in this context. Professor Lloyd€™s claims to the contrary are based on the same kinds of squishy arguments made by the PACE authors.
The InnovAiT article continues in this vein. In presenting what it claims to be the US Centers for Disease Control€™s definition of the illness, it cites the elements of the retired Fukuda definition, including the notion that €œfatigue€ is the core symptom. It is not a secret that the agency now uses the case definition proposed in 2015 by a report from the Institute of Medicine (now the National Academy of Medicine), which frames €œexertion intolerance€, and not fatigue per se, as the characteristic symptom. It is unclear why Professor Glasziou and his colleagues chose not to update such critical information as the case definition used by the lead US public health agency. This sort of obvious misstatement of current reality has no place in the medical literature.
The paper includes other problematic statements, such as this: €œPatients are encouraged to see symptoms as temporary and reversible, as a result of the current physical weakness.€ This advice is exactly wrong and based on flawed research. That’s why the CDC and Kaiser Permanente, for example, have switched course.
And while the article does mention that surveys of patients have found harms from GET, it rationalizes away these reported harms by asserting that €œthis finding is believed to be due to inappropriately planned or progressed exercise programmes.€ This suggestion, that reported harms in surveys are likely be due to poor implementation of GET rather than GET itself, has become something like accepted wisdom among GET proponents. In fact, this idee fixe is not supported by the evidence, as patient and researcher Tom Kindlon noted in a tweet. Just because the claim €œis believed€ to be true by the article authors and like-minded pro-GET colleagues does not make it so.
Here€™s part of a post about this article from Emerge Australia, an organization based in Melbourne: €œExercise as an answer to ME/CFS is rooted in the outdated idea that patients are somehow ‘deconditioned€™ (i.e. have lost muscle tone) through an erroneous or psychiatric belief that they are unwell and that patients can be restored to pre-illness condition simply through exercising. This goes completely against all of the huge progress that has recently been made €“ including in Australia €“ identifying biological differences between patients with the condition and healthy controls. Perpetuating the idea that patients have ‘false illness beliefs€™ or that ‘the answer is exercise€™ increases the stigma surrounding the condition, leads to patients being dismissed by doctors and continues the likelihood that more patients might be harmed by exercise programmes. It also has a direct negative impact on funding decisions that seek to investigate the biomedical basis of ME/CFS.€
The article has also been the subject of a lively discussion on the Science For ME Forum: https://www.s4me.info/threads/€œgraded-exercise-therapy-chronic-fatigue-syndrome€-by-the-handi-working-group-2019.10469/