What about Exercise?
For physiotherapists, no matter what our speciality, exercise is our go-to treatment. It's been shown to help almost every medical condition going, and is an important part of a healthy lifestyle.
The members of Physios for ME are physiotherapists, and we support exercise in general wholeheartedly.
When it comes to Myalgic Encephalomyelitis there are known contraindications to exercise that all physiotherapists must be aware of.
In the UK, the NICE Guidelines were updated and published in October 2021 with new guidance:
Physios for ME's response to the updated NICE Guidelines can be read here.
In the US, the Centre for Disease Control (CDC) have also removed GET from their guidelines.
Why isn't GET recommended?
For a quick overview we strongly recommend watching these videos (both under 10 minutes).
Any graded exercise programme, no matter how gentle it starts or how slowly it progresses, hinges on the concept that the person being treated is deconditioned. In general, this is why graded approaches to exercise work well for most other conditions.
However, the disease process involved in ME includes adverse physiological responses to exertion. These processes make up the hallmark symptom of ME known as "Post Exertional Malaise".
Graded Exercise Therapy will inevitably push a patient beyond their capabilities and trigger Post Exertional Malaise, causing physiological reactions that will make symptoms worse. People with ME have identified GET as the reason for a deterioration in their symptoms.
Physiotherapists should be actively avoiding any treatment that triggers Post Exertional Malaise.
For more information, this is a one-page summary of the issues around Graded Exercise Therapy.
For more in depth information, see the free resources provided by The Workwell Foundation, a team of exercise physiologists and physiotherapists in the US who "focus on research concerning the functional aspects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to facilitate an understanding of the biological basis for fatigue and post-exertional malaise (PEM)."
Is ALL exercise out-of-bounds?
In theory, if an exercise avoids triggering Post Exertional Malaise, then it should not be harmful. Case studies have explored how to provide realistic exercise programmes for people with ME.
The problem with Post Exertional Malaise is it has a delayed presentation, so it would be impossible to know if the exercise you prescribe is triggering symptoms or not.
This is why we would recommend establishing an effective pacing regime using Heart Rate monitors. The use of a Heart Rate monitor could provide a real-time indication of a person's response to exercise. However, there is limited evidence in this area at this time.
When considering prescribing exercise for a person with ME, you must consider:
1. What is the purpose of the exercise?
2. How will this exercise help this specific person?
3. How will I measure whether this person can tolerate this exercise?
4. How will I measure whether this exercise is having benefit to this specific person?
5. Am I trying to "recondition" this person, or help them with symptom management?
If you're not sure, set aside the time to understand ME further, or feel free to contact us. We don't have all the answers but we can help to talk through a case and work together to problem solve.
“Do not offer people with ME/CFS physical activity or exercise programmes that use fixed incremental increases, based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.”