CFS/ME Rehabilitation Checklist

What is rehabilitation?

The World Health Organisation has defined rehabilitation as:

“A process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides people with the tools they need to attain independence and self-determination.”
Access to rehabilitation is a human right.

The Bristol CFS/ME Service aims to support people living with CFS/ME in developing optimal self-management and rehabilitation. However, surveys carried out by patient charities have found that rehabilitation approaches have been problematic for some people living with CFS/ME. We wanted to learn more about this, so that these problems could be avoided. We therefore worked with the national charity Action for ME on their detailed survey of patient experiences of Graded Exercise Therapy (GET), Graded Activity Therapy (GAT) and Exercise on Prescription which was carried out in 2010. A detailed analysis of the responses to the ‘free text’ sections of the survey was carried out which encouraged respondents to write about their experiences of these therapies. We published the findings from this research in a peer-reviewed journal1 as we think that it is important to share knowledge about what works well, and what the problems can be, especially as these problems can be avoided.

We found that key issues for a number of survey participants included:

  • difficulties setting a sustainable baseline for exercise or activity (see below)
  • the importance of good quality therapist-patient communication and collaboration.

Based on our clinical experience and the feedback analysed in Action for M.E.’s patient survey, we devised the following checklist to help people living with CFS/ME to ensure that they receive the best advice and support from their rehabilitation therapist.

Rehabilitation checklist

1. Have you been fully assessed?

A full assessment should take into account the history of your condition, your symptoms, factors which aggravate your symptoms, your current functional ability, sleep pattern, any medication and any other medical conditions. All of these factors can influence your treatment plan. If you and your therapist understand the factors which aggravate your symptoms, and your current activity level, you will be able to develop a more appropriate rehabilitation plan.

2. Do you have significant "ups and downs" in your symptoms and ability from day to day?

If so, it will probably help you to spend some time on stabilising your patterns of activity before planning to increase any activity or exercise. This focus on stability may be called pacing, activity management or baseline setting.

3. Have you spent time with your therapist discussing your baselines for activities?

A "baseline" is a manageable amount of physical or mental activity which can be achieved on most days of the week, without provoking a setback. A baseline is not your "personal best", but it is a lower, sustainable level of activity.

4. Are you able to work to your baselines in practice?

It is one thing to know what your baseline for activity is: it is another thing to stick to it! It is tempting to do more on a good day, but this can feed into a pattern of overdoing and then recovering: "boom and bust". If you find yourself doing a lot of "booming and busting" (also known as activity cycling) then you would probably do well to focus on stabilising your activity levels before planning any increases.

5. Have you discussed strategies to increase your exercise or activity level with your therapist?

For CFS/ME rehabilitation, small increases, for example 10% from the baseline are commonly used. This is typically followed by a period of days or weeks before the next increase.

6. Do you understand that you may experience a mild, acceptable increase in symptoms following your increase in exercise?

This increase in symptoms is common, but should settle after a week or two at your slightly higher level of exercise/activity. This increase in symptoms should feel acceptable to you. It is important to realise that rehabilitation is not aimed at relieving symptoms in the short term: it is aimed at making gentle progress with function. However, people that do well with rehabilitation tend to report fewer symptoms in the longer term.

7. Have you discussed a setback plan with your therapist?

Setbacks or relapses are fairly common for people with CFS/ME, and can be triggered by a range of factors including too-rapid increases in physical activity, mental activity or stress. If you experience a setback during your rehabilitation, have you agreed a plan with your therapist about how you will adapt/reduce your activity?

8. Is your rehabilitation focused on your personal goals?

Rehabilitation works best if the activity or exercise is linked with making progress in your rehabilitation goals. Rehabilitation goals are personal, and may include a range of activities such as walking, housework, gardening, exercise, socialising, and voluntary or paid employment.

9. Do you understand that not everyone makes progress with rehabilitation?

Research suggests that people who plan to slowly increase their activities and exercise are twice as likely to make moderate improvement at the end of a year. However, approximately one third of people with CFS/ME who try to slowly build up their activity didn't manage to make significant progress2. If you are one of these people, try not to be disheartened: at least you know that you have tried to gradually build up your activities, and you have done the best you can to make progress at this stage. Your therapist should understand that not everyone makes progress with rehabilitation.

10. Are you seeing a therapist who has had success with rehabilitation for people with CFS/ME?

If your therapist doesn't have experience of rehabilitation for people with CFS/ME, then you could ask to see a specialist who has. Or, you could ask your therapist to seek advice and supervision from a specialist therapist. 

This checklist is in line with the National Institute for Health and Care Excellence (NICE) guideline for CFS/ME which says that “GET should be delivered only by a suitably trained GET therapist with experience in CFS/ME, under appropriate clinical supervision.”

The guideline goes onto say that, when starting a course of GET, the healthcare professional should:

  • assess the person’s current daily activities to determine their baseline
  • agree with them a level of additional low-intensity exercise that is sustainable, independent of daily fluctuations in symptoms and does not lead to ‘boom and bust’ cycles; this may be sitting up in bed or brushing hair for people with severe CFS/M.E., or gentle stretches or a slow walk
  • encourage them to undertake this exercise for at least five days out of seven, or build up to this level if and when possible
  • advise them that this level of exercise may mildly increase symptoms for a few days (for example, a mild to moderate increase in stiffness and fatigue), explain why this may occur and discuss strategies to mitigate it
  • offer information on the management of setbacks/ relapses.

At the heart of rehabilitation is an empathic interaction between the person and the therapist which gives rise to the process of building confidence and gently restoring function whilst managing what can often be a very challenging health condition.

References:

  1. Gladwell, P.W. et al. Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. Disability and Rehabilitation, 2014. 36(5): p. 387-394.
  2. White, P.D. et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet, 2011. 377: p. 823-36.