Exercise Is Not The Answer. MECFS & Physiotherapy Part 1 Dangers of Exertion
Harms of exercise* in MECFS
Unnecessary Post Exertional Malaise
Inducing relapses
Baseline decline
*Excercise here means any exertion beyond what the patient naturally does. This can be prescribed by a physio or doctor or can be the result of pressure to "increase activity."
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Unnecessary Post Exertional Malaise:
PEM is an exacerbation of symptoms 24-48 hours following exertion. It is the defining symptom of MECFS and causes severe pain, fatigue, flu symptoms, migraines, nausea and more. Patients rightfully modify their lives to avoid this suffering and it is wrong to induce it unnecessarily.
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Inducing Relapses: Severe PEM can induce a relapse. This is defined as a significant worsening of symptoms in a patient that do not resolve within a few weeks.* Relapses are mentally and physically taxing and require a complete reworking of a person's life and daily activities to adjust to their new level of functioning.
*The timeframe for what a patient will consider a relapse varies depending on past recovery from PEM.
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Baseline Decline:
Even without a relapse repeated PEM can lead to not recovering full functionality between crashes which in turn causes a permanent decline in functioning that can take years to improve or often never does.
Baseline decline is extremely dangerous as there is little to no support for severely ill patients in most countries. While all ME is terrible, being completely bedbound and unable to access toileting, food, water, or medical care unassisted is very dangerous. Extreme light and noise sensitivity can also then lead to uncontrolled decline.
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Red Flags
Graded Increases / Goal of Increasing Activity
Prescriptive
Doesn't Understand PEM
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Graded Increases / Goal of Increasing Activity:
MECFS is a disease with no cure. Only 5% of patients recover. Therefore the goal should be managing a patient's life with their current energy level and decreasing symptoms. If the goal is to increase activity* this signals a poor understanding of prognosis.
*Note activity is different from functionality. Using energy more efficiently can lead to increases in functionality.
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Prescriptive:
MECFS is a fluctuating condition. Therefore it is not appropriate to prescribe a set PT routine. Instead, all PT should be dependent on how the patient feels that day and patients should always have the option to cancel and take a rest day if they are experiencing PEM.
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Doesn't Understand PEM:
If the practitioner does not actively warn about what PEM may look like and how to avoid it they are not safe for MECFS patients. This is because patients often struggle when first diagnosed to identify early warning signs of a crash. Simply relying on patients to know when to stop is insufficient. The practitioner must take responsibility for understanding and preventing PEM in their clients.
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Resources
@movement_with_me
Physios for ME
Workwell Foundation
Angela Flacks Guide to Heart Rate Monitoring for MECFS
See www.meandmore.net/resources for links.
