Currently, there is no cure for ME/CFS or evidence-based treatments that are proven to be effective. However, there is still a lot that health professionals can do for people living with ME/CFS. The goal of treatment is to improve a patient’s quality of life and to provide relief from symptoms.
Current treatment for ME/CFS has three key aspects:
- stepwise symptom management
Pacing and rest
Pacing is a management strategy designed to help people with ME/CFS live within their energy envelope and minimise post-exertional malaise (PEM). The energy envelope is the amount of energy a person with ME/CFS has available each day. This is energy that they can safely use without triggering post-exertional malaise (which is the worsening of symptoms after exertion).
Pacing can help patients to improve their quality of life and reduce their symptoms although it is not a cure. Pacing is considered to be an important self-management tool by doctors who specialise in treating people with ME/CFS and by patients around the world. Pacing involves undertaking less activity than the patient has energy available for on a given day, and breaking activities down into short bursts, interspersed with rest. For example, instead of taking a shower, brushing their teeth and combing their hair in one go, pacing might mean that they take a shower and then rest, until they feel ready to undertake the next activity.
The aim of pacing is to leave some ‘fuel in the tank’ at the end of the activity. Some ME/CFS doctors advise their patients to try to do no more than 50-60% of what they feel they can do. Pacing, like any other skill, must be practised. It becomes easier over time.
Rest should mean absolutely minimal activity, which means no stimulation. TV, social media, reading or listening to music can all be stimulating – doing these activities stops the body resting fully. Good pacing involves including periods of rest throughout the day and especially between activities. If possible, patients should not attempt more activity until their PEM has reduced.
In an ideal world, patients would always be able to stay within their energy envelope and would never experience PEM but this is probably not possible or realistic. Many people have work or family commitments, or live alone, and daily life takes them beyond their energy envelope.
In addition to this, sometimes there are activities that they want to do and that are important for overall wellbeing that will take them outside of their energy envelope. It is important to be flexible and realistic, but also to return to the principles of pacing and try to build them into everyday life.
Stepwise symptom management
While pacing and rest are self-management approaches, GPs and healthcare practitioners can help with stepwise symptom management.
- ranking symptoms from most to least problematic
- exploring options to help reduce symptoms, starting with the most problematic
This approach to management isn’t treating the underlying cause of ME/CFS, but it can help to improve overall quality of life. In undertaking this approach, GPs should also take into account that many people with ME/CFS are sensitive to medications, so they should take a ‘start-low, go-slow’ approach.