An excellent post, thank you.
It should be, despite much misconception by the medical establishment particularly here in the UK, self-evident that in ME, where post-exertional malaise is the core symptom, that GET is a profoundly risky enterprise. There is clear physiological evidence for an underlying exercise intolerance. To use GET as a routine intervention of choice is as rational as universally prescribing nuts for people with nut allergies.
Despite the ongoing denial of the PACE appologists, there is no reliable evidence that GET for ME has any statistically significant benefit in the published randomised control trials, and in survey data, as reported here, a majority of participants report serious harm. Having said that, in both trials and surveys, some participants report improvement following GET. Given we as patients have spent years objecting to researchers ignoring our views, is it worth also considering the views of the small percentage that believe GET has helped them?
What are the possible explanations:
Misdiagnosis: The published randomised control trials that purportedly support GET use very lose definitions of ‘CFS/ME’ where ‘the symptom of chronic fatigue’ may be confounded with ‘Chronic Fatigue Syndrome’. In general practice the confusion about accurate diagnosis is potentially even greater, meaning that we can not be certain that all survey respondents have ME. Consequently it is a probability that some participants in both were misdiagnosed as having ME when they in reality had a different fatigue related condition, eg ‘depression’, where GET may be an appropriate intervention.
Coincidence: Given the variability of ME, with some exhibiting spontaneous recovery or cycles of relapse and remission, it is possible that by chance some people experienced spontaneous improvement at the same time as undergoing GET. Given we all look for external explanations for changes in our condition, it is not unsurprising that people in this situation attribute the improvement to GET.
Placebo: Placebo, in general use has two related meanings, an intervention that results in some nonspecific improvement, but not by the hypothesised mechanism, or an intervention that does not result in improvement but because of the act of intervening convinces people they have improved. Because of the poor design of the randomised control trials it is not possible to rule out a placebo effect. So it is probable that some reported improvement following GET was an artefact of intervention having taken place rather than anything inherent in the intervention.
Indoctrination: The PACE and related trials placed great emphasis on convincing participants that GET will help them. In PACE itself participants were clearly exposed to the belief that this was already an established successful intervention. Many GET practitioners firmly believe on the basis of poor, but peer reviewed and widely lauded, science that this intervention is helpful. Given the ‘experts’ believe GET works, some participants inevitably will believe it has helped them, even if there is no objective improvement. This is likely to be reinforced by ‘cognitive dissonance’, where participants seek to rationalise participating in a demanding activity when it is what they are least able to do.
Restructuring total activity: When I record my total daily activity in the context of a self imposed objective or external intervention, I often find what I thought was an overall improvement turns out to be an improvement in a specific activity at the expense of other activities. In effect I subconsciously do less of other things in order to facilitate the target activity. In this context it is possible that some GET participants get better at GET, not because of a general improvement, but because they learn to do less of other things. Now this is easily addressed by electronic activity monitoring (eg Fitbit), but published pro GET studies have either failed to undertake such monitoring or suppressed the results. Psychologically it is a fine distinction between getting better at GET and GET being helpful.
GET as pacing: Anecdotally one hears of GET practitioners that ignore the PACE model of arbitrary externally imposed increments of increased activity and ignore the advice to disregard adverse reactions to push through the ‘pain’. Here the practitioner creates a therapeutic environment where they are sensitive to the current abilities of the participant, use sensitive increments and pull back on any increase when there are adverse reactions. At a certain point such ‘GET’ becomes almost indistinguishable from pacing. Where the GET practitioner is an experienced and sensitive clinician this ‘softening’ of GET is perhaps inevitable.
GET actually helps some: At present we can not rule out the possibility that there are a small number of people with ME/CFS that are actually helped by GET. However we have no idea if this is the case, or if such a subgroup exists how to identify them. Certainly it is not reasonable to impose likely harm on a majority of people with ME on the off chance that it may help a yet as unidentified small minority.
