How to combine GET with daily physical activities
Posted: Sun Aug 18, 2013 10:57 am
In a graded exercise programme, you're supposed to increase duration or intensity by only small amounts to avoid setbacks. This may be fairly easy to control during exercise but how do you fit in other physical activity during the day, which is often much less easy to control?
I've used GET to help improve in the 17 years I've had CFS/ME. I haven't recovered but during the periods when my illness has been worse, GET has helped me to get back to a better level. It's reduced fatigue considerably, improved physical function to some extent and made the illness more stable with fewer setbacks. After a gradual improvement, it's always seemed to happen that another viral infection has laid me low again. After a quick decline it's then taken a long, slow climb back, helped by GET. I've wondered whether the improvement might have continued if it hadn't been for the infections.
My CFS/ME has never been worse than mild/moderate and I'm one of those who would fit the PACE criterion of having fatigue as my main symptom. My GET is a DIY version and it's never been managed by a clinician. In the last six months I've been trying a version close to that in the PACE therapists' manual http://www.pacetrial.org/docs/get-therapist-manual.pdf and found it helpful. I've been able to increase my heart-rate to a reasonable target using a heart rate monitor, and over the period my muscle mass has increased. However, on days when I've done the exercise I do little else physical or I'll have a setback for several days. If I want to do other things, I don't do the exercise. So how do I combine the two? The exercise I use is walking.
I don't accept the deconditioning model but take the view that GET is of benefit (to me and some others) in spite of the inappropriate model. I'm now much fitter than I was when I had a sedentary job before the CFS/ME. In those days I really was deconditioned but I could suddenly decide to spend a day hill-walking and not suffer any ill-effects, apart from some aching and tiredness that would go in a day or two, without abnormal rest. Now that I'm fitter, not deconditioned but with CFS/ME, if I overdo it by just a modest amount it can take two days (or more) of doing almost nothing to get back to where I was. Something else I don't accept is the NICE/PACE edict to carry on regardless with the exercise after overdoing it. The PACE manual does emphasise a partnership between the patient and the therapist. Clinicians should not be trying to persuade patients to undertake exercise they aren't comfortable with.
The interaction between physical activity and mental well-being applies in many illnesses. Perhaps, when GET works, it does so by providing goals and the encouragement of seeing improvement in capability, in a CBT kind of way. Perhaps it helps by improving deep, restorative sleep.
I also know other people with CFS/ME who have used NHS clinics and found the therapies helpful, including GET. However, I know that others have reported that exercise has caused harm, including on this forum, and I have every sympathy with them. Many aspects of CFS/ME vary enormously between individuals for reasons that are largely unknown, and that includes exercise tolerance. Perhaps one day the reasons will become clearer.
I've used GET to help improve in the 17 years I've had CFS/ME. I haven't recovered but during the periods when my illness has been worse, GET has helped me to get back to a better level. It's reduced fatigue considerably, improved physical function to some extent and made the illness more stable with fewer setbacks. After a gradual improvement, it's always seemed to happen that another viral infection has laid me low again. After a quick decline it's then taken a long, slow climb back, helped by GET. I've wondered whether the improvement might have continued if it hadn't been for the infections.
My CFS/ME has never been worse than mild/moderate and I'm one of those who would fit the PACE criterion of having fatigue as my main symptom. My GET is a DIY version and it's never been managed by a clinician. In the last six months I've been trying a version close to that in the PACE therapists' manual http://www.pacetrial.org/docs/get-therapist-manual.pdf and found it helpful. I've been able to increase my heart-rate to a reasonable target using a heart rate monitor, and over the period my muscle mass has increased. However, on days when I've done the exercise I do little else physical or I'll have a setback for several days. If I want to do other things, I don't do the exercise. So how do I combine the two? The exercise I use is walking.
I don't accept the deconditioning model but take the view that GET is of benefit (to me and some others) in spite of the inappropriate model. I'm now much fitter than I was when I had a sedentary job before the CFS/ME. In those days I really was deconditioned but I could suddenly decide to spend a day hill-walking and not suffer any ill-effects, apart from some aching and tiredness that would go in a day or two, without abnormal rest. Now that I'm fitter, not deconditioned but with CFS/ME, if I overdo it by just a modest amount it can take two days (or more) of doing almost nothing to get back to where I was. Something else I don't accept is the NICE/PACE edict to carry on regardless with the exercise after overdoing it. The PACE manual does emphasise a partnership between the patient and the therapist. Clinicians should not be trying to persuade patients to undertake exercise they aren't comfortable with.
The interaction between physical activity and mental well-being applies in many illnesses. Perhaps, when GET works, it does so by providing goals and the encouragement of seeing improvement in capability, in a CBT kind of way. Perhaps it helps by improving deep, restorative sleep.
I also know other people with CFS/ME who have used NHS clinics and found the therapies helpful, including GET. However, I know that others have reported that exercise has caused harm, including on this forum, and I have every sympathy with them. Many aspects of CFS/ME vary enormously between individuals for reasons that are largely unknown, and that includes exercise tolerance. Perhaps one day the reasons will become clearer.