PEM Is A Survival Reflex…Why Post Exertional Malaise Isn't The Punishment You Think It Is.
Post Exertional Malaise
Is an exacerbation of symptoms of MECFS following physical or mental exertion. Symptoms include
-Headache and Migraine
-Muscle pain
-Joint pain
-Muscle weakness and paralysis
-Muscle spasms or seizures
-Nausea and/or gastroparesis
-Sore throat
-Fever
-Temperature imbalance
-Tachycardia or increased HR
-Decreased blood volume
-Air hunger
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Punishment View
One view of PEM is that it is Myalgic Encephalomyelitis' way of punishing you for exertion. This view can be very helpful for explaining PEM to those not used to it. For example
"If I go out to coffee with you my body will punish me with a migraine and extreme fatigue tomorrow."
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Downsides
The problem with viewing PEM as punishment it is creates a very adversarial relationship between the person and their body. The reality is more complex.
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A different view
The reality is that MECFS affects our energy metabolism at a cellular level. Cardiopulmonary Excercise Testing or CPET shows this fatigue as a decrease in metabolic and cardiac functioning. Beyond this, we see a further decrease following activity. This is how 2-day CPETs are diagnostic for ME.
So if we know we have decreased cellular energy following activity, it would be dangerous for us to spend that limited energy. PEM exists to protect us from that danger.
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Danger articulated
What exactly does PEM protect us from? While the molecular energy ATP is necessary for all aspects of life. In particular, brain and cardiac functions are necessary to survive. MECFS patients already die at a much lower age than standard from cardiac arrest. Additionally, very severe ME patients often suffer from an inability to digest food or gastroparesis which can be deadly if not remedied.
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PEM as protection
I argue that the symptoms of PEM actually form incredibly useful protective barriers against death. For example one of the key symptoms from mild to extremely severe cases is a headache and extreme fatigue. Severe enough to force the person to bed. This is the best energy-saving procedure the body can put in place. Similarly, symptoms like nausea encourage the person to eat simple easy-to-digest foods or refrain from eating if possible. Migraine and headaches encourage the person not to do any mentally taxing activities either. Even air hunger is generally caused by a low respiratory rate saving energy down to the very act of breathing.
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Effective Protection
Not only can PEM be seen as protection from death, I hypothesize it is a fairly effective form of protection.
On CPET studies ME patients regularly score as low as late-stage heart failure patients. The functional ability of ME patients is often comparable to cancer or AIDs patients who are close to death. In fact, an extremely common account of the experience of severe ME is "living death" and patients feel like their bodies are dying. Yet death from ME is extremely rare.
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The Paradox of Dying from ME
Consider this, to die from ME in the most direct way would require your body's energy to fully run out in an area essential for life. Statistically, this seems to be the heart as cardiac deaths are the most affected in ME mortality.
But before the person's energy ran out they would almost certainly trigger PEM with the activity using up the energy. PEM in turn stops the person from continuing said action, even to the point of paralyzing them. Without the ability to expend any energy beyond the bare minimum for life, the person slowly recovers energy. By the time they are able to attempt the activity again, they have enough energy to once again trigger PEM rather than die.
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A teaching mechanism
Not only does PEM stop patients from directly killing themselves by exhausting their energy, it also teaches them to protect their energy going forward. Severe pain is a strong incentive not to attempt the action that caused it again. In this sense, PEM is a punishment designed to "correct" behavior into compatibility with the broken metabolic system of ME bodies.
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Conclusion
I hate PEM. This post hasn't made me stop hating PEM and I don't expect it to stop you either. But it has helped remind me that our broken bodies are still doing their best every day to protect us and keep us alive. Living with ME means living with energy deficiencies. The symptoms of PEM and ME exist as our body's way of flaring the check engine light and telling us our gas is out. While we may wish PEM did not exist, without it, it is possible ME could be a much deadlier disease. The protection of PEM is both a blessing and a curse. But when we understand its purpose we can at least understand what we are working with rather than fighting an unknown force of pain and suffering.
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I hate Post Exertional Malaise or PEM and I expect you do too. But that doesn't mean it is pointless. Myalgic Encephalomyelitis causes severe suffering often referred to as living death and can have a quality of life worse than late-stage chemotherapy or AIDS patients.
In severe ME groups we often ponder on the cruel twist of fate that this disease can be so disabling and painful yet so rarely terminal (although it should be noted that very Severe ME and extremely Severe ME can and do kill people) The explanation I present here is that the most distinctive feature of MECFS PEM aka PENE or Post Exertional Neuroimmune Exhaustion is actually a strong protective barrier against potential mortality.
While this is obviously a hypothesis as we cannot separate PEM from #ME it would seem supported by the cases of ME patients who do die. I believe it also explains why the most severe patients are those who are pushed the hardest. Those whose PEM response was either weaker or ignored. It is why Stop Rest Pace is such an effective strategy to prevent disease progression, "giving in" to PEM is not giving in to the disease, it is respecting our body's self-defense against the disease.
Thinking of PEM as punishment is a very helpful metaphor for explaining to others why we cannot do activities. Explaining that our bodies punish us for exertion. But it is not a helpful way of relating to our body's self-defense mechanism. Our bodies are trying to protect us. When we acknowledge that, it might not make us love PEM, but it can at least remind us that resting to restore our basic life force is more than punishment, it is survival.
