Exercise is Not the Answer. MECFS & Physiotherapy Part 2 Unrealistic Expectations
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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Things Excercise Should Not Be Used for in MECFS Patients
Overall Symptom Reduction
Increasing Activity
Avoiding Functional Limits from Deconditioning
Mental Health
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Overall Symptom Reduction:
Due to PEM causing severe symptoms in the vast majority of patients it is highly unlikely exercise will reduce symptoms and is far more likely to increase overall symptoms. Exercise should not be prescribed for general symptom reduction.
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Increasing Activity:
When MECFS patients exercise it causes severe symptoms that decrease their overall activity levels. Exercise therapy often causes people with MECFS to become bedbound for days, weeks, months or years and cause requires patients to drop out of school or work.
When GET was used to attempt gradual increases in activity 80% of patients were permanently made worse. Note that in the 5% of patients who naturally get better activity increasing regimes can appear to "work" so long as they are slow and steady. But this is simply due to that patient being the 1 in 20 who recover, or on the upside of relapsing-remitting. It does not make the treatment safe or effective.
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Avoiding Functional Limits from Deconditioning:
Because exercise causes such severe symptom exacerbation in patients with MECFS they are unlikely to see any positive effects from avoiding deconditioning. The movement patients do regularly is enough to sustain the movement they do regularly. Studies show that deconditioning in MECFS patients happens after reductions in functionality. Reductions in functionality are not a result of deconditioning.
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Mental health:
It is well known that exercise benefits mental health. Some people with mild ME may find that the benefit to their mental health of short walks or yoga routines is worth minor symptom exacerbation.
However, patients should be severely cautioned against letting their mental health rely on any form of exercise no matter their severity. This is because relapses are unpredictable and it is dangerous for patients to lose their primary coping mechanism at the same time they face a massive setback. If a patient is struggling with mental health they should be referred to a chronic illness and MECFS informed therapist who can help them process the grief of living with severe illness.
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Is exercise useless then?
It is important to remember that people with MECFS are a unique demographic that responds differently to exercise than the vast majority of people. Advice for pacing in MECFS is extremely specific and important to this group of patients but does not apply to everyone with fatigue and chronic illness. If a patient knows their fatigue is not caused by MECFS because they do not experience PEM they should not be discouraged from exercising.
Additionally, targeted movement can occasionally be helpful in treating comorbidities of MECFS. This will be explored further in part 3 of the series "When is targeted movement appropriate?"
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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.
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Excercise can do great harm in MECFS as was covered in part 1 of this series. But even if your practitioner knows how to safely use targeted movement, promising unrealistic goals can still greatly harm patients.
Some of the most common reasons to prescribe movement in MyalgicEncephalomyelitis or ME are actually opposite to the effect of exercise in this disease.
For example: symptom reduction or decreasing deconditioning. Patients who overexert will have increased symptoms and increased muscle weakness. It has been shown that deconditioning in ME is the result of a decrease in functioning. Deconditioning does not cause a decrease in functioning.
Likewise, when graded movement is used to "increase activity" the additional symptoms cause a decrease in functionality. In other words even if a graded program manages to increase say the number of steps in a day it will fail and in fact hurt the amount of useful activity the person is able to complete. There are often stories of people being forced or encouraged to drop out of their job or schooling in order to continue with physical therapy. This is completely backward. We should be helping patients continue with the activities they care about, not taking them away.
Finally, while mental health is a major issue for persons with ME/CFS and many do find exertional activities helpful, we should not encourage patients to primarily base their mental health in exercise or productivity because when we do so we set them up for a massive mental health crisis if their disease relapses, their baseline declines, or even a basic episode of PEM (Post Exertional Malaise). Maintaining mental health in MECFS must start from a place of acceptance and decoupling your worth from your physical function.
Pushing to increase your physical function to increase your mental health is the wrong way around. It is much easier to improve your mental health in therapy leading to less stress and fewer physical symptoms.
