Following on from numerous patients describing that increasing exercise as part of either their GET or CBT made them worse, Prof Crawley explained that GET is “absolutely not” about increasing exercise, but about reducing it:
“In graded exercise therapy, people sometimes think that we’re trying to increase exercise. That’s absolutely not the case. To begin with, the very important thing about graded exercise is to reduce over-exercise. We all agree that over-exercise is a problem. So actually graded exercise is about reducing that.” (Prof Esther Crawley speaking on “Call You and Yours: Chronic Fatigue Syndrome and ME”
http://www.bbc.co.uk/programmes/b095ptl7 approx. 37:40)
I find it very uncomfortable when patients’ correct understanding of GET or other aspects of their illness or care is presented to the media as a misperception. While setting a baseline that is not characterised by boom-bust pattern is generally included at the beginning of GET programmes, the suggestion that in GET we’re “absolutely not” “trying to increase exercise” is just a lie. Was it meant to undermine the credibility of the patients’ experiences described throughout the programme?
Compare to the NICE guidelines’ description of GET p.247-8:
“People with mild or moderate CFS/ME should be offered GET that includes
planned
increases in the duration of physical activity. The intensity should then
be
increased when appropriate, leading to aerobic exercise (that is, exercise that
increases the pulse rate). [1.6.2.13]
…
Progressing with GET
When the low-intensity exercise can be sustained for 5 days out of 7 (usually
accompanied by a reduction in perceived exertion), the duration should be
reviewed and
increased, if appropriate, by up to 20%. For example, a 5-minute
walk becomes 6 minutes, or a person with severe CFS/ME sits up in bed for a
longer period, or walks to another room more often. The aim is to reach 30
minutes of low-intensity exercise. [1.6.2.17]
When the duration of low-intensity exercise has reached 30 minutes, the intensity
of the exercise may be
increased gradually up to an aerobic heart rate zone, as
assessed individually by a healthcare professional. A rate of 50–70% maximum
heart rate is recommended. [1.6.2.18]
Exercise intensity should be measured using a heart rate monitor, so that the
person knows they are within their target heart rate zone. [1.6.2.19]
If agreed GET goals are met, exercise duration and intensity may be
increased
further if appropriate, if other daily activities can also be sustained, and in
agreement with the person with CFS/ME. [1.6.2.20]”
The description of GET below is from a 2017 paper co-authored by Prof Crawley, entitled Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood (behind paywall here
http://adc.bmj.com/content/102/10/981.long):
“The GET programme starts at a low intensity. Walking is the easiest exercise to access as it is functional and cheap. The walk duration is initially set by the therapist following an assessment of the young person’s current ability. The walk should be carried out at their own steady pace with a heart rate between 40% and 50% of their maximum heart rate and be continuous. This should be carried out at least five times a week. Once this has been achieved and maintained, without a daily fluctuation in overall activity levels, the young person can
increase the duration of the walk to reach 30 minutes. This is done carefully with a graduated approach,
increasing 10%–25% every 3–14 days. Once the young person is able to carry out 30 minutes of low intensity exercise 5–7 days a week, they can begin to
increase the intensity of the walk, using interval training. The training heart rate will aim to rise between 50% and 70% of their maximum heart rate. Using a heart rate monitor can avoid over exercising which can lead to an exacerbation in symptoms. The graded exercise model is displayed in figure 2.” (Brigden et al 2017:3)
Figure 2 The graded exercise model
And the PACE trial’s description of GET is also clear that increasing exercise is the whole point, while acknowledging that overexertion must be avoided:
“Therapeutic strategies consisted of establishment of a baseline of achievable exercise or physical activity, followed by a negotiated, incremental
increase in the duration of time spent physically active. Target heart rate ranges were set when necessary to avoid overexertion, which eventually aimed at 30 min of light exercise five times a week. When this rate was achieved, the intensity and aerobic nature of the exercise was gradually
increased, with participant feedback and mutual planning.” (White et al 2011:825).
