The good news is it won’t* kill you. (*without help)

I want to address something that I’ve said a few times in the past (Here and here, and I touch on it here, for example) with isn’t entirely 100% perfectly accurate. That ME/CFS won’t kill you.

Aside from the increases in suicide risk, there is a very small chance that with assistance/negligence from medical professionals or carers, or from an accident of luck, ME/CFS can result in death.

How does ME result in death?

It’s incredibly unlikely to kill because it should be self limiting. In the few recorded cases of death from ME/CFS, it came as a result of extreme nerve and brain inflammation caused by overexertion. Whenever someone with ME/CFS uses their nerves, to move, feel, or think, it stresses the body. Too much movement, sensory input, or mental effort results in inflammation and damage.

I can no longer rely on certain parts of my brain due to the damage done by pushing myself too far in the past. Singing, for example, used to be one of my favourite stress releases, but due to intermittent tone deadness caused by damage in my brain, I can no longer be sure I’m hitting even close to the right notes any more.

Nerves aren’t the best as healing, so once they’re damaged they tend to stay damaged. This is one if the reasons ME/CFS is degenerative – the signals aren’t getting through the network of nerve cells.

Out bodies have millions of nerve cells, nerve clusters, and nerve fibres, some if which behave almost like mini brains. Some keep our hearts pumping, some make our digestive system work, some send the ‘go’ signal to our muscles, and some send the ‘ouch’ signals to our brains. Some simply tell us which way us up, while others contemplate the nature of existence. All can be damaged by inflammation.

Generally speaking, when we overexert ourselves, causing inflammation in our muscles, nerves and organs, the damage is short lived or imperceptible, but like a steady trickle of water eroding a cliff face, every over exertion chips away at the integrity of our various tissues. Eventually we notice we can’t stand up without getting dizzy, or our arms are weak, or we struggle with making our vocal apparatus form words. We may carry on long enough that we become too weak to stand, or stop being able to digest solid food, or sensory input makes us ill… or all of the above and more. At this point, washing the car becomes harder and the need to stay within our limits gets more urgent and obvious.

I would hope that most people would learn this before becoming so I’ll they were bed ridden and needing to be fed through a tube.

At the point of being bed ridden, even using the toilet or lifting a fork might be too much, and it is very important that those limits are respected.

Recorded deaths due to ME

As I discussed in my post on severe ME awareness day last year, there are documented cases of young women with ME dying as a result of being forced to exercise by healthcare workers. These young women were too sick to stand, but in the name of physiotherapy they were made to move, despite the pain and illness it caused them. Their doctors believed that they were simply afraid of exercise and that increasing their strength and fitness would improve their health.

Their autopsies showed that both died of massive nerve and brain inflammation as a result of exercising with ME.

Clearly, being unable to eat food or move independently will result in death without the incredible interventions available through modern medicine. Therefore, the shutting down of an essential process, such as digestion, will also result in death without that intervention. I don’t know if there are any estimates of numbers of deaths from ME in poorer countries, or other populations without adequate access to this kind of healthcare (I often worry about poor people with very severe ME living in the USA. I’m not aware of any numbers being published relating to deaths in this population, but I suspect they’re probably over represented in our very high suicide rates).

What about when it doesn’t kill you?

Any time we push a little beyond our body’s limits (which can be exceedingly low for people with ME/CFS), inflammation is produced by cells. I still can’t work out why inflammation is a thing, as it seems to be entirely damaging and never helpful. Maybe someone out there can tell me what benefits there are to this strange mechanism? Depending on the tissue and severity, this damage might just be a short term inconvenience, or it could result in cell death.

Overexertion for me can happen in as little as 20 seconds on some days and with some activities. It might be 30 minutes or a few hours in other situations. There are different signals I get that tell me I should rest, and a few that tell me to STOP NOW!!! NO ARGUING!!! (sudden tears and vomiting or falling asleep right then and there are a few). Sometimes I don’t realise I’ve overdone it until the next day, when I lose the ability to form or comprehend language but I can’t control my vocal apparatus sufficiently to speak anyway.

Like that cliff face and the wee trickle of water, the damage can come all at once, like a landslide, or it can erode it a little at a time until there’s a canyon where there used to be solid rock.

River stone with a hole worn through the centre
Little bits of water over a long time wore a hole in this rock.

I’ve been fortunate enough to only suffer minimal permanent damage from the few times I’ve reached that point of systemic collapse, but it really does come down to luck.

One of my friends was “moderate”, like me. A little less functional than I am now, but she was able to drive, and she could walk with a walker or stick. Then one day she was feeling pretty good, and the floor was looking pretty grubby, and when was the last time I cleaned the windows? She gave her house a thorough cleaning and she knew she’d pushed a little too far. It wasn’t until the resulting crash didn’t let up that she realised that she’d pushed herself over a ledge. She now lives in the dark, using an electric scooter to get around, struggles to communicate verbally or by text, and is now “severely ill” with ME.

I talk a bit more about the cost if activity here.

Gambling with your life

Ultimately, activity is a game of Russian Roulette for someone with ME/CFS. Every time we push that little bit too hard we ask “is this the crash that I won’t recover from?” Will this one kill an essential bodily function? And every time we lose a little bit of our former selves we ask “was it worth it?” *

My wedding was one of those crashes. I do think it was worth the small amount of damage it did, but I don’t think I’d want to risk repeating it either.

I have a lot to lose if I push too hard. I’m getting pretty good at knowing when I’m going over my limit, but I’m not so good at deciding to stop at that point.

Cleaning the windows will never be worth becoming a severe case.

When over exertion could literally result in my death, I have to remind myself regularly that a clean house isn’t worth dying for.

* I get a lot of people trying to stop me doing things in case I overexert myself, so I will write about choice, independence, and trade offs later, as this is an important topic to address.


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