Severe ME Kills
Severe ME can kill in many ways here are just a few...
-Suicide
-Heart Failure
-Brainstem Inflammation
-Malnutrition
-Pure Autonomic Failure
-Infection / "Natural Causes"
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Suicide
Over 50% of severe ME patients have contemplated suicide. In contrast to 5% of the normal population. These are not generally suicides out of a passionate depression. These are suicides that come about from years of unimaginable pain and suffering. The people who commit them often have shown a deep dedication to life. However, medical neglect and severe chronic pain combined with a near-zero quality of life being completely bedbound lead to the completely understandable* decision to end one's life after living death has taken hold.
*I still believe patients with ME should try to stay alive as long as they can bear as research is ongoing and spontaneous remissions do happen. But everyone has a limit and severe ME is beyond many people's limits.
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Heart Failure
ME patients die an average of 25 years younger than healthy patients of heart failure. We do not know why this is but given the common dysautonomia and tachycardia as well as the fact that ME affects every muscle in the body it is not surprising that heart failure is a common cause of death among ME patients.
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Brainstem Inflammation
In the deaths of Sophia Mirza, Alison Hunter, Merryn Croft, and many others, post mortem autopsies showed brainstem inflammation in particular dorsal root ganglionitis as a cause of death. This is supported by other more recent studies that also show brainstem inflammation in living severe ME patients.
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Malnutrition
A relatively common symptom in very severe and extremely severe ME is gastroparesis or paralysis of the gastrointestinal tract. This can render the patient completely unable to eat. Unfortunately, this is often misdiagnosed as anorexia leaving patients extremely malnourished. Even in cases where tube feeding for anorexia would be warranted tube feeding has been denied. Delayed access to TPN or feeding tubes can cause death from malnutrition as an inability to tolerate TPN or inability to process nutrients.
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Pure Autonomic Failure
This extreme form of dysautonomia can occur in severe ME patients and lead to extreme dips in blood pressure, extreme tachycardia, and other issues with breathing, heart rate, and blood flow that if not managed in time can lead to death.
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Infection / "Natural Causes"
Many deaths from severe ME are labeled as deaths from infection or natural causes. This is because very severe patients are so close to death it takes very little to send them over the edge. While they may have an infection at the time of death or many not have a visible cause of death when someone has been bedbound and severely disabled for years by a severe neuroimmunological disease this labeling of deaths as "natural causes" is abhorrent and is both caused by and enforces the narrative that ME is not a deadly illness. It is.
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So for all the severe patients out there who have been told you are overreacting or you need psychiatric care or graded exercise therapy please know you are not overreacting and standing up for yourself as a patient just might save your life.
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Myalgic encephalomyelitis is often referred to in severe cases as a living death. But less attention is paid to the actual death it can cause.
I will start by acknowledging that death from MECFS is extremely rare. While we do not have good statistics due to ME rarely being the listed cause of death even in cases where it is a clear if not overwhelming factor, we do know it is not a common occurrence. If you have ME, please don't take this post as a list of terrible ways you will die, that is not at all accurate. Most people at risk of these complications are extremely severe ME patients and are aware of these risks.
But it is important that the public and doctors know that this illness can kill because the misconception that ME is never deadly is often how these deaths are allowed to happen.
It is also important to acknowledge the frailty of severe ME patients and the risk this puts them at for death. Even if they do end up dying from cancer or infection or stroke their inability to tolerate or seek medical care is often directly a result of ME and these deaths should be considered when looking at the overall burden faced by ME patients.
Finally, the awareness of death in extremely severe ME patients is important as it validates and explains why it is so important for all ME patients and particularly severe ME patients to pace effectively. It is not just your health on the line, it is your life. pacing is a life-saving tool. In fact, the most likely reason ME is not more deadly is because PEM naturally teaches ME patients that they must reduce their activity to save their lives. PEM is a survival instinct in this way. When our bodies do not have the energy to function they cut off energy to all non-essential functions to keep us alive.
So while you should not take this post as a sign of your impending doom, please do take it as an important message about just how serious this disease can be and just how important management strategies like Stop, Rest, Pace really are.
