When "Pacing" is not. Recognizing GET & other inappropriate recommendations for activity management in MECFS.
What is Graded Exercise Theory (GET)?
Graded exercise therapy is a therapy used to recondition patients who have become deconditioned. This means rebuilding muscle and orthostatic tolerance.
The key components of graded exercise therapy are:
-Consistent levels of movement day to day regardless of how you feel
-Gradually increasing exercise levels over time
Graded exercise therapy is very effective at reconditioning patients whose only problem is deconditioning.
—-
Why GET is not recommended for patients with MECFS
MECFS is not caused by deconditioning. Deconditioning may occur in MECFS patients due to the need to restrict exertion and remain seated or horizontal because of orthostatic intollerance caused by low blood volume and dysautonomia.
Trying to cure MECFS with GET is like trying to cure a broken leg by walking on it. While patients who recover will eventually need to gradually increase activity, increasing activity will not cause recovery.
Furthermore, just as walking on a broken leg prevents the bones healing and may cause permenant damage, GET in the absence of recovery causes post exertional malaise which at best prevents healing and at worst can lead to permenant deterioration.
A 2019 survey by NICE of over 2,000 patient with MECFS found that 67% deteriorated and 11% failed to improve. 81% had worsened symptoms primarily pain and fatigue. The rate of severe patients went from 13% to 35%.
—-
Recognizing GET
Because GET is no longer recommended for MECFS and has rightfully gained a reputation as harmful, many programs have rebranded. They may say they provide "adaptive physical therapy," "patient-led exercise programs" or even "pacing."
Thus it is important to learn not to recognize GET by name but by its harmful key values.
These 3 red flags should be used:
1.) Promotes the idea of reconditioning, readjusting to movement, or fear of movement.
2.) Promotes consistency of movement every day regardless of how you feel.
3.) Promotes a gradual increase in movement or upright hours, outside of patients reporting recovery.
—-
The Biopsychosocial (BPS) Model
The disproven biopsychosocial (BPS) model of chronic fatigue syndrome proposes that MECFS does not have any underlying physical cause and is due to deconditioning perpetuated by psychosocial factors like fear of exercise and desire for dependence.
This model proposes that graded exercise to stop deconditioning and cognitive behavior therapy to convince the patient they are healthy will cure MECFS.
The BPS model cannot explain and is contradicted by findings of dysautonomia in absence of deconditioning, low blood volume, immunological changes, 2-day CPET results, and neuroinflammation in MECFS patients.
GET & CBT have failed as cures for MECFS and permanently harmed many patients.
—-
Recognizing The Biopsychosocial Model
Besides the explicit terms biopsychosocial or psychosocial factors there are some components of the BPS model you can watch out for to avoid ineffective and harmful treatment plans.
Red flags:
-Illness without a disease, assumes no underlying biological dysfunction
-Attributes dysautonomia completely to deconditioning
-Talks about "illness behavior"
-Presumes there is some incentive for you to stay sick
-Talks about fear of health and exercise
-Misunderstands post-exertional malaise
—-
Post Exertional Malaise Is Not The Same As Post Workout Fatigue / Soreness
Many biopsychosocial programs presume that post-exertional malaise is simply a dressed-up way of talking about post-workout fatigue or soreness. That people with MECFS are simply afraid of a normal bodily process.
When normal people exercise intensely the buildup of lactic acid in their muscles and the repair of damaged muscle tissue leads to pain and soreness in the following days.
However, post-exertional malaise is not just sensitivity to normal workout fatigue.
Key Differences Include
Workout Fatigue
-Normal reaction after physically demanding exercise
-Muscle soreness located where exertion occurred
-Part of healing back stronger and building muscle
Post Exertional Malaise
-Disproportionate reaction to minor daily tasks or minimal exercise
-Neuroimmunological changes, migraine, severe fatigue, full body muscle spasm and pain unrelated to area of exertion
-Contributes to progression of disease
Avoiding exercise because of post-workout soreness would be irrational. But avoiding post-exertional malaise is both rational and necessary.
—-
What Should Pacing Recommendations Look Like?
Good pacing recommendations come in many forms and can be highly individualized. But all should emphasize:
1.) Listening to your body and stopping at signs of overexertion such a tachycardia, flushing, and muscle weakness.
2.) Sticking to activities that do not cause post-exertional malaise.
3.) Avoiding boom bust cycles where you do too much and crash repeatedly.
4.) Increasing or decreasing activity based on long-term trends in health and symptoms.
Good pacing recommendations will never tell you to ignore your bodies' symptoms or to increase your activity if it makes you feel worse.
The goal should be to maximize feeling well and doing the things you care about. Not maximizing your exercise.
—-
Is GET Ever Appropriate for MECFS Patients?
When a patient is getting better either because of recovery or remission, their pacing recommendations will closely mirror graded exercise therapy.
They will be slowly increasing activity to find their new improved baseline.
However, even in these cases this is not GET and GET is not appropriate.
Many people with ME do not recover fully but rather simply improve their capacity. Therefore if they are prescribed graded exercise therapy they will not know when to stop and will potentially push themselves into crashing and undoing progress.
Even when patients are improving and gradually increasing activity it should be done under a framework of pacing, in dialogue with the body to look for the right balance of movement.
—-
The Takeaway
Graded Excercise Therapy is harmful and dangerous to people with MECFS. We know this because
1.) Survey results of patients treated with GET show 81% had worsened symptoms
2.) GET is based on a theory that physical dysfunction is caused by deconditioning which cannot account for CPET results, tilt table testing, immunologic abnormalities and neuroinflammation observed in MECFS.
3.) GET teaches patients to ignore their bodies warning signs in opposition to pacing, the recommended activity management strategy for MECFS.
4.) GET does not account for post exertional malaise, the defining symptom of MECFS.
Because GET is not recommended for MECFS programs may be titled pacing or activity management. Harmful programs can be recognized because they
1.) Promote the idea of reconditioning and readjusting to movement due to fear of movement.
2.) Promote consistent levels of movement every day regardless of how you feel.
3.) Promote a gradual increase in movement or upright hours, outside of patients reporting recovery.
—-
Graded Excercise Therapy aka GET is the devil that won't stop coming for patients with Myalgic Encephalomyelitis aka MECFS.
⠀
Despite being disowned by the CDC, NICE, and Mayo Clinic, GET continues to make its way into clinics and treatment plans for patients with "Chronic Fatigue Syndrome."
⠀
Often renamed as activity management or even masquerading as the legitimate energy management strategy pacing, GET continues to be pushed by PTs who simply never got the memo or choose to ignore it and protect their profits.
⠀
I believe the reason so many patients and doctors continue to try GET even after it's been disproven is two fold.
⠀
The first is simple: we need to spread the message that GET is harmful and it is not acceptable to prescribe a treatment that worsens symptoms in 81% of patients and doubles the rate of severe ME.
⠀
The second is harder. GET seems like it should work even if it doesn't. The idea that gradually increasing your exertion to "sneak around" crashing intuitively feels like it could work. It is far more appealing than pacing, a therapy that at best promises to help reduce symptoms, not get you back to work.
⠀
But the reality is that Post Exertional Neuroimmune Exhaustion PENE aka Post Exertional Malaise PEM is the foundational element of ME / CFS. And we don't know what's causing it so no amount of sneaking or gradual incrementation will get you around it.
⠀
Instead, any program that asks you to not listen to your body and instead gradually increase your movement day, week, or even month by month will inevitably trigger crash after crash, a repeated cycle that overtime leads to more symptoms and permanently worsened illness. A result shown time and time again in retrospective studies of those who undergo this treatment.
⠀
Deconditioning is terrible, and if thats your only problem GET is a great solution. But if you experience sore throat, headache, muscle weakness, pain, fatigue and more when you exert that is not deconditioning, that is PENE/PEM, and combining that with GET is a recipe for disaster.
