How to combine GET with daily physical activities

Please ask our experts about physical activity & exercise in relation to CFS/ME here.

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by johnchisholm on Sun Aug 18, 2013 10:57 am

How to combine GET with daily physical activities

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 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.

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Jessica Bavinton
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by Jessica Bavinton on Tue Aug 20, 2013 12:04 pm

Re: How to combine GET with daily physical activities

Dear johnchisolm

Thanks for your question: you make an important point about combining GET with other physical activities during the day. It’s also encouraging to hear your progress and your experiences.
In its broadest sense, ANY physical activity could be incorporated into a GET programme – and such, any physical activity being done in the day also needs to be taken into account.

Therefore, this is why – at the start of a programme – great care is taken to understand the current physical (and cognitive, vocational, family, social) activity in a person’s life, as well as how well they are sleeping, and how they feel emotionally.

We encourage two things at the start:
1) Stabilising ‘general’ physical activity in the day or week to a manageable level (sometimes this means increasing, sometimes decreasing). We do this using pacing strategies and activity diary analysis, and we encourage people to adapt activities to gain more stability with activity, and hence symptoms.

2) The exercise / physical activity component, or the 'GET, is something small and manageable that can be added to this more stable physical activity level without causing problems: it’s usually something quite small - for someone moderately affected, it could be something like a 5 minute walk (even though the person may be capable of doing 15mins), for someone severely affected it could be some stretches, or a walk involving a few steps to a commode. This is a level agreed and negotiated between the therapist and patient after a thorough discussion; not ‘prescribed.’

The ongoing programme is then always an interplay between ‘exercise’ and ‘general everyday activity’ and both must be taken into account carefully. Some people find it helpful to consider their ‘exercise’ and ‘general everyday activity’ as two very separate things, even though we know they are very much related.

I agree that GET also helps considerably when it comes to setting goals (and hence a future to look forward to and plan towards), sleep, managing mood / anxiety and giving people clear and measurable progress indicators. It provides a clear, gently incremental structure which many people find useful, and also encourages people to stop at a pre-determined level to avoid over activity.

Absolutely: the partnership between the patient and therapist is fundamental.

Good luck with your ongoing recovery.
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME

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