Exercise and ME
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.
This page details some of the reasons why exercise-based approaches are not suitable, and answers some common questions about this matter.
Graded Exercise Therapy ("GET")
A previously used form of “treatment” for ME was called Graded Exercise Therapy (GET), based on the principles that people with ME were deconditioned and actively avoiding physical activity. GET worked on the assumption that a gradual reintroduction of exercise would help them to recover.
However, people with ME have identified GET as the the reason for a deterioration in their symptoms. 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" and physiotherapists should be actively avoiding any treatment that triggers Post Exertional Malaise.
After a review of the evidence 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.
For more information, this is a one-page summary of the issues around Graded Exercise Therapy. For a quick overview as to why GET is not recommended for people with ME we strongly recommend watching these videos (both under 10 minutes).
Frequently asked questions about exercise for ME
“If you reduce your activity, then you will become deconditioned, so surely we will need to use exercise to prevent or treat this?”
It is logical to assume that reduced activity will lead to deconditioning.
However, deconditioning is not a defining characteristic of people with ME. In exercise tests, some people with ME have shown no difference in aerobic fitness compared to matched controls or even had better fitness.
Deconditioning has also been ruled out as a cause for the orthostatic intolerances often found associated with ME/CFS as part of autonomic dysfunction.
Further inconsistencies have been seen in cardio-pulmonary exercise tests (CPET) that are repeated after 24 hours. Healthy sedentary controls and people with disorders that are associated with deconditioning such as chronic lung and heart disease, HIV and multiple sclerosis, can reproduce or even improve upon their results from the previous day.
In contrast, people with ME have shown a marked deterioration in performance on the second test. This deterioration in performance is inconsistent with deconditioning and instead may reflect the hallmark feature of ME/CFS, post exertional malaise (PEM).
Deconditioning should therefore be considered a potential secondary complication of ME, as opposed to a primary cause. But while exercise may typically address deconditioning in other populations, for people with ME exercise is likely to trigger PEM, worsen symptoms and cause greater inactivity, and will therefore probably be counter-productive.
“The Cochrane Review states: exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies.”
The Cochrane Review on exercise therapy for chronic fatigue syndrome is often cited as evidence for the inclusion of exercise for a person with ME. However, to apply the review to clinical practice it is vital to understand the final sentence of the conclusion:
“All studies were conducted with outpatients diagnosed with 1994 criteria of the Centers for Disease Control and Prevention or the Oxford criteria, or both. Patients diagnosed using other criteria may experience different effects.”
Both these diagnostic criteria do not include PEM as essential for diagnosis. A systematic review of physiotherapy interventions for people with ME in relation to diagnostic criteria found that there is no evidence for effective physiotherapy interventions when people are diagnosed in respect of presence of PEM.
To understand further the diagnostic issues around ME, see slide four of our seven slides for physios, “PEM, Fatigue and Diagnostic issues”.
“Is there any real evidence that exercise will make people worse in the long-term?”
There are many examples of patient reported harms from exercise, often with longer-term issues linked to exercise interventions. While these should be enough to instigate caution, the reports are subjective and not produced in robust clinical trials, so if someone was looking for high quality clinical evidence of long-term harm then they may discount these patient reported outcomes.
Unfortunately, data on patient harms from graded exercise therapy has not been routinely collected in trials or in clinical practice. The benefits of exercise therapy in larger RCTs have failed to be shown objectively and in fact a review of many trials has shown more people have been unable to work after undergoing exercise therapy.
This intervention has been shown to cause harm in the short-term and no long-term benefits. While no robust evidence exists to prove long-term harm, it is questionable whether such a study would be given ethical approval. A clinician must use their clinical reasoning skills to determine whether exercise is an appropriate intervention considering what is already known about its effects.
"Does this mean a person with ME can NEVER exercise?"
Not necessarily. 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.
It is important to remember:
Exercise may be considered for pain management, to strengthen a muscle group for a function eg sit to stand, strengthen the muscle pump for improved venous return in orthostatic intolerance, or because exercise may be important to that person and they want to find a way to include it in their life.
Exercise may also be indicated for an issue unrelated to ME, such as a musculoskeletal injury or rehabilitation following surgery. But ME symptoms MUST take priority regardless. An exercise may have to be modified with respect to position and intensity in order for the person to manage without causing post exertional malaise.
The problem with post exertional malaise (PEM) is it usually has a delayed presentation, so it would be impossible to know if the exercise you prescribe is triggering symptoms at the time. Additionally, PEM can also be triggered by cognitive, sensory and emotional exertion. It is therefore very important to first understand how the person is managing their activities of daily living. If they are only managing the bare minimum through strict energy management strategies, then adding in extra physical exertion may simply cause them to deteriorate.
Therefore when considering prescribing exercise for a person with ME, you must consider:
What is the purpose of the exercise?
What type of exercise is best for this person?
How will I monitor whether this person can tolerate this exercise?
How will I measure whether the exercise is benefitting this person?
Is exercise an appropriate use of energy for this person?
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.
If we can't use exercise, then what CAN we do as physiotherapists?
Physiotherapy is not restricted to exercise. Our profession holds many skills that may benefit a person with ME with symptom management and to improve their quality of life. These management strategies are discussed here.
“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.”
Exercise is not a treatment or cure for ME and may make symptoms worse