Nervous about trying graded exercise therapy

Publsihed in InterAction 58, Winter 2006

We regret that our medical adviser cannot respond to individual enquiries

Dear Doctor: Nervous about trying graded exercise therapy

I’ve recently been referred to the new CFS service in my area and they want to put me on a graded exercise therapy (GET) programme. I feel quite confused about what this therapy is and what I should expect from the programme. I’m also not sure if there is one standardised way of applying it or if different clinics’ approaches vary depending on how severely you are affected.

From what I read there is research showing GET to be helpful at alleviating symptoms and boosting energy in some people with M.E./CFS but in contrast several people in my local M.E. group have found that such programmes are too much for them and have made them worse.

Is there a rationale behind how GET is thought to help M.E./CFS as I thought the main diagnostic criteria was fatigue and pain which are exacerbated by physical or mental activity? Also, should I continue with the programme if my symptoms do at any point get worse?

Name withheld

Action for M.E. principal medical adviser, immunologist Prof Tony Pinching responded:

This is an area where it can be hard to separate facts from polemic. Here is my interpretation of the former!

Several studies on ambulant (i.e. mild to moderate) CFS/M.E. patients have shown that GET can be beneficial. Whilst some people theorise that this therapy helps by overcoming physical deconditioning, it might impact the illness by some other means. We do not know whether GET helps people with moderate to severe CFS/M.E., as that hasn’t been studied.

The relevance of formal exercise to someone who struggles with the basic activities of daily living is doubtful, so most therapists would focus on activity rather than exercise. Also, someone who is normally sedentary and wants to improve their cognitive function might prefer a graded build-up of mental tasks, rather than physical ones.

Some people have indeed reported feeling worse after GET. However in evaluating such concerns (for instance in a survey by Action for M.E.), it became apparent that some weren’t actually receiving GET but an unsupervised exercise programme, while others were being treated by someone who wasn’t trained to offer GET or wasn’t following the recommended treatment approach.

In the new NHS specialist services across England, you should be getting advice and treatment from trained and experienced therapists. Your programme should be planned following discussion and agreement with you, and only after a careful assessment of your current level and circumstances.

Therapists in clinical practice should adapt the clinical trial data to your circumstances, severity, previous experience with day-to-day activities, and preferences. In that sense, each treatment programme is individualised, yet they will be based on a common set of principles and practice. (It’s a bit like a pair of spectacles or shoes; they have certain basic agreed characteristics, but each pair is tailored to meet your needs).

If you’re more severely affected, you need to be sure that the ‘exercise’ or activity that is suggested is of a type and level that is relevant to your functioning and practical needs; if not, you should discuss the plan with your therapist again.

The programme should start at a level that you are currently able to manage, and would then build up stepwise under supervision (the steps having been agreed with you in advance). Temporary increases in symptoms can occur after a step up, but they should not persist or increase. If they do, the therapist should take you back to the previous step, stabilise you and then try a smaller step later.

The rate of build up will vary according to your circumstances and the impact of previous steps. We’re not talking about a set of pre-determined steps that continue to increase at set times regardless of their impact on you! Yet some of the adverse experiences reported seem to have resulted from people doing just that. You will be given advice and explanation, but you are not obliged to do something that you don’t feel comfortable with. After your assessment has been completed, you may want to agree with your therapist some ground rules about what to do if the initial plan doesn’t work out, so that you avoid misunderstandings.

Remember, treatment programmes are designed to help you to improve. If they do that’s great, but if they don’t you should not persist, though you may want to consider something different. Your therapists are there to help and guide you, and they would discuss with you how and when to adapt or change your treatment if it isn’t working.

Specialist Physiotherapist in CFS/M.E. Jessica Bavinton commented:

Graded exercise therapy is the use of regular, physical exercise to aid recovery from CFS/M.E., but considers exercise in its broadest sense, including lifting a finger or rolling over in bed.

As a physiotherapist working solely with CFS/M.E., I have seen exercise significantly improve energy levels, pain and sleep, and also lift spirits. I am constantly amazed at the effect this can create on overall levels of daily activity and quality of life in a significant number of people I work with.

An effective GET programme will be jointly negotiated between yourself and a therapist (usually a physiotherapist), and will take into account current activity levels and other important factors such as sleep quality and setbacks.

Any activity carried out to excess and beyond the capacity of that individual’s current physical level has the potential to increase symptoms and make them feel worse. To ensure that this doesn’t happen, it’s essential to start activities at a low level, tailored to the individual and to build up very gradually.

The main principles of GET

• Gentle stretches are often a good start for exercise, as these can help your muscles to feel more comfortable and help prepare them for activity. You might work with your physiotherapist to plan a stretching programme to start with, even before you look at adding activity. Some people find gentle yoga stretches particularly helpful.
• Negotiate an initial activity with your therapist: one that you really enjoy or one that is necessary in your life.
• This activity is started at a level that you know you can achieve manageably on at least five days out of seven. Choose a realistic, regular, and enjoyable activity. Many people start with walking because it is one of the main physical activities we undertake. Those with very limited mobility might start by moving their head or arms/legs gently in bed, or perhaps rolling over once an hour. Others can consider more challenging physical activities such as gardening or DIY while those mobile enough and interested in sports may be more inclined to use cycling or swimming.
• Once this can be done consistently, the time you do this activity for can be increased slightly. The increases you try out should be very small e.g. a five-minute sit in a chair becomes six minutes. Going from five to ten minutes would not be advisable as this is an enormous 100% increase: our bodies tend only to be happy with increases of around 20%.
• Getting started might seem difficult, possibly creating manageable feelings of stiffness or fatigue as a normal physiological response to activity. After a few days of maintaining the activity at this new level, these responses subside as the body adapts and strengthens. Gentle stretches can help minimise any stiffness and keep you supple.
• Keep to this level of activity until you are used to it and it feels OK.
• Once it feels OK (you’re getting stronger!), another small increase in time can be added.
• When you can do an activity for a good length of time at a comfortable pace, (e.g. 20 minutes), it’s then helpful to start increasing the intensity of the activity. This might mean walking slightly faster for part of the time, for example.

This process may take anywhere from weeks to months – progress may be slow, and should be steady: patience and keeping your brakes on may be just as important as increasing activity. Many people have told me it can be difficult to work out how to progress the intensity of exercise, as some normal responses to exercise can be worrying if they feel similar to CFS/M.E. symptoms.

A physiotherapist might use a heart rate monitor, which is an objective measure of how hard you are working, possibly alongside a ‘Rate of Perceived Exertion’ Scale. These tools can help you to work out how to increase slowly and comfortably.

Managing setbacks

During a setback, it’s useful to maintain as much activity as you can. This is to avoid the weakening and tightening of muscles and the reduction in fitness which can occur surprisingly quickly (we lose 10% of our muscle strength after just one week of bed-rest). It’s therefore useful to maintain any activity levels if you can, rather than reducing them. Gradually and carefully returning to normal activity levels is then important.

If the setback continues there is likely to be another reason for this. You should seek the further advice of your physiotherapist or doctor. Common reasons include difficulties sleeping, an infection, stress, or feeling low in mood. It should be noted that GET is only one aspect of a physiotherapist’s role in the management of CFS/M.E.: he or she will also be able to assess and advise on goal setting, leisure and social activity, relaxation, and support you in organising and pacing your daily activity and plans.

Until recently one of the CFS physios at Bart’s hospital in London, Jessica Bavinton now works in private practice.