Is PEM Inherently Dangerous?

Welp. I need to talk about something I saw the other day on Instagram. I wish I could tell you that it was a cute video of a puppy dressed up in human clothes (I mean, that’s like 50% of my algorithm these days), but it wasn’t.

It was a reel from someone with ME/CFS saying, with absolute certainty, that PEM is extremely dangerous, and that every single time you engage with PEM, you increase your chances of becoming permanently bedbound, or even dying from it.

And just… I mean… wow.

It’s a big, beautiful world out here on the internet, and everybody — myself included — has a microphone and the right to say anything they want. We all get to express ourselves, and I do believe that most people sharing on a platform are doing so with the intention to inform and protect.

But I do have to address what’s being said here, with as much sensitivity as I can.

Because I know this is a very, very important topic. It brings up deep feelings around how profoundly misunderstood PEM is by the outside world. It highlights the reality that people HAVE gotten worse by being pushed beyond their baseline by loved ones, coworkers, and even medical providers. There has been real damage and loss around this issue. So it’s probably one of the most sensitive things I could speak to — and it may even bring backlash.

But I still want to try to address this idea of PEM being dangerous and help to extract truth from fiction.

So what is the truth? Is PEM inherently dangerous? Is it inherently irreversible? Does every single encounter with it make you more likely to end up permanently bedbound?

In order to talk about this, we first need to acknowledge that, like most conversations around ME/CFS, this is a complex and nuanced topic. It begins with understanding what PEM actually is: a cascading, physiological, multi-system response to overwhelm in the body.

From there, we have to separate truth from fear-based narratives. Especially because much of our community has been told that recovery isn’t possible, that all you can do is maintain and try not to get worse, and that the best way to do that is to completely avoid PEM.

The truth, based on what we see from a mountain of community evidence, shared stories, and research, is that when PEM is frequent, intense, and repeated over long periods of time — through continually pushing beyond your limits and crashing — many people (not all) do experience worsening symptoms and a lower functional baseline.

Some people live in push–crash and maintain the same baseline. Others, like myself, end up with a much worse baseline and slip into severe.

I pushed and crashed for three years and landed in a baseline I didn’t even know was possible. It was really, really bad. I had a dozen new symptoms I didn’t know you could have, and my quality of life was extremely poor.

And when you’re in that kind of state, and you don’t know how to get out, and your whole community is telling you that you won’t get out — it absolutely feels permanent.

It’s terrifying.

But what does the science say? Is it actually permanent?

There is no evidence I have seen that shows that the dysregulation in a body with ME/CFS is inherently permanent, nor that a crash is a permanent state.

There is evidence of people getting stuck at a baseline for long periods of time, but that does not mean there isn’t a way out.

We know this because so many people do come out of long crashes — even those who don’t believe in recovery will often describe crashes that lasted years and then eventually shifted.

But when it comes to ME/CFS, there is no clear scientific evidence showing that PEM itself causes irreversible damage in that way. What we see instead is something different.

We see that prolonged pushing and crashing creates increasing dysregulation in the systems that maintain homeostasis. The body becomes more sensitive, more reactive, and more likely to crash again. Energy production can also become more dysregulated over time, making crashes more frequent or easier to trigger.

This is what I call the quicksand nature of ME/CFS — because people can get stuck in these patterns for months or even years. And that’s where the language of permanency comes from. Because if something lasts for years, it sure as hell feels permanent.

I also want to validate that in the most severe cases of ME/CFS, people can become so debilitated that some have died from secondary complications of being that unwell. But to say that PEM itself is the direct cause of death is not scientifically accurate.

These conversations are important because for every person filling a newly diagnosed person with terror about “becoming permanently bedbound,” there is another influencer telling them not to fear PEM at all. And some people take that advice and run with it (literally), pushing themselves straight into the very crashes they were told not to worry about.

My point is that all of this language lacks nuance.

That is why, like so many conversations in recovery, I live in the middle. I honor PEM as a kind of wisdom of the body — something that speaks to our current limits — and those limits need to be respected, not feared.

PEM that comes from overdoing — especially when paired with fear, terror, or despair — can increase sensitivity and make future crashes more likely.

But PEM that arises from very gentle expansion, when combined with regulation, can begin to unwind the conditioned push–crash cycle.

I’m trying to say that I understand what both sides are pointing to.

Those who have lost function are trying to protect you from pushing and crashing. And those who have recovered — and yes, people do recover, including myself — have seen that if you avoid all stimulation out of fear, you can actually become more sensitive over time.

We’ve also seen that if you don’t treat PEM like a prison, but more like a playpen with soft, penetrable edges, you can begin to expand safely over time.

I want to leave you with this:

If you carry the belief that PEM could permanently damage you every time it happens, that fear alone can increase reactivity and make crashes more likely.

The truth is not fear, and it’s not dismissal. It’s learning to work with your body.

That means building a relationship with PEM — learning your limits, and very, very gently working with them over time.

Just my two cents.