Exercise is Not the Answer. MECFS & Physiotherapy Part 3 When is Targeted Movement Acceptable?
Reminder: Harms of Exercise
Please remember that the defining symptom of MECFS is Post Exertional Malaise. An increase in symptoms 24 to 48 hours after any form of exertion. As such exercise can do great harm to patients. As discussed in part 1 of this series, exercise in MECFS patients can cause:
Unnecessary PEM
Relapses
&
Baseline Decline
All of which can have permanent consequences on a patient's ability to work, study and live independently lasting years or decades.
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Targeted Movement vs Excercise
The evidence is clear that exercise is not an appropriate treatment for MECFS. However, targeted movement can occasionally be appropriate for treating comorbidities of MECFS. Here are key differences of targeted movement to exercise
-Movement itself is not the goal
-The movement has a treatment goal besides MECFS
-The movement will only be done if it produces symptom reduction
-Minimal effort is exerted by the patient
Please be aware that just because a treatment is targeted movement and not exercise does not make it immune to doing harm. Patients should always have the right to say no to any treatment involving movement or exercise based on their internal bodily experience.
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Benefits of Targeted Movement in MECFS Patients
Maintaining Range of Motion
Decreasing Fibromyalgia Pain
Targeting Orthostatic Intolerance
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Maintaining Range of Motion: In patients with an autoinflammatory condition like arthritis, it may be important to avoid range of motion loss. This can be done by assisted movement in severe patients or weightless low intensity stretching in mild to moderate patients.
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Decreasing Fibromyalgia Pain: Gentle stretching or yoga has been proven to greatly improve pain in fibromyalgia patients. If a patient is able to perform these stretches without inducing PEM they are an appropriate pain-relieving tool. Note that this does not mean they should be suggested or used in severe patients who cannot perform the movements without PEM and should not be used as a reason to deny pain relief.
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Targeting Orthostatic Intolerance: Some targeted exercises have been shown to improve orthostatic intolerance, particularly in patients with severe POTS or EDS. Once again medications should not be dependent on a patient's ability to perform these exercises. But they should be known as a potential tool in patients who can utilize this PT without inducing PEM.
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Green Flags
Pacing / Goal of Increasing Functionality & Reducing Symptoms: While overall energy cannot be expected to increase, a reasonable goal of increasing functionality and reducing symptoms can be set. This is done through reducing overall exertion using mobility aids and strategic planning and then carefully targeting movement at symptom reduction and essential tasks.
Patient-Driven: Listens extensively to a patient's history and helps them piece together what activities cause PEM and how to avoid crashing. Structures their program so that the patient always has control of their movement and can scale it in response to symptoms.
Data-Driven: Uses heart rate or HRV monitoring to detect PEM early. Assists patient in finding objective measurements that can allow for consistent pacing.
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Resources
@movement_with_mePhysios for ME
Workwell Foundation
Angela Flacks Guide to Heart Rate Monitoring for MECFS
See www.meandmore.net/resources for links.
